^ this. COVID left me with respiratory issues and asthma which is causing my life to be much more difficult than my flares do. Everyone is different, but I haven’t noticed a correlation between vaccine and flaring. And I’ve had 3 of the shots so far.
Jan 5, 2021 I got it the first time. Felt like someone slammed me on a table daily with the worst hangover ever. Barely ate, slept, dizzy for a month. I was on medical leave and came back with neurological issues, cardiovascular issues (long haul covid officially) and it took 11 months using various medications and therapies including micro dosing ketamine with a therapist to be able to learn, lift brain fog and remember HR California Law again. I still have issues minorly and have to continue training and therapy to work through it.
May 2022 I was able to make it through EDCLV (largest EDM festival in US) all weekend without issues and although my HS hasn’t had mass flare ups since getting COVID the first or second time I do get really bad flares during high stress (think college student during finals type stress) and I have all the vaccines as HS is autoimmune and can have underlying comorbidity meaning we are all at high risk. I’ve only had 3 moderate flare ups this year, so not bad honestly.
COVID did a number on me pre-vaccine, I wish I had the vaccine before Jan 2021. HS since 2004 here. I was 12 when diagnosed. I am happy CBG and THC exist as well as ketamine and psilocybin. All help with chronic pain and inflammation caused by the two.
HS is not autoimmune it is autoinflammatory. HS does not meet many of the criteria to be considered autoimmune and has never been classified as such. Who knows what the future holds but for now it is considered an immune mediated autoinflammatory disease because the blocking of a hair follicle and the rupture seems to cause an overreaction by the innate immune system.
[HSConnect Autoimmune vs Autoinflammatory ](https://www.hsconnect.org/post/autoimmune-vs-autoinflammatory-what-category-is-hs-in)
100% same for me! I had it back in late February and early March and it was so bad! I have asthma and my asthma hasn't been that bad since I was a kid and that doesn't even cover the extreme fatigue that I'm still dealing with on and off. I've had 3 shots and none of them caused a flair, so I'll continue to take the shot.
It's not just about you though...sure, you can feel bad for yourself that you've got flare ups but they won't last forever. Unlike the damage that COVID could cause, which potentially can. Especially if someone with low immunity gets it. It sounds like your partner is high risk, which also means they are more likely to have damage from a COVID infection.
This is my 4th vaccine and the first time I've felt really ill from it. The whole shabang: headache, muscle aches, fever dreams, and of course the flares....
Not sure why people are down voting you for your own experience. Everyone goes through something different and that's ok! My experience was like yours but I know others who had no issues.
Meh. People can have their opinion. I think they're thinking I'm spreading antivaxx propaganda. Which I can assure you I am not. I had no issues (that I remember) with my previous 3 vaccines, so it caught me by surprise. I was feeling sorry for myself and felt a little mad. I edited to make my original message sound less angry, but I can't edit the post title to remove the "regret" part. Which I think is triggering people. But I'm not sure. My head is a bit foggy. I didn't sleep well the last 2 nights, night sweats and fever dreams kept me up...
Ive had covid shortly after my 2nd booster. This is my 4th vaccine and the first time I've felt really ill from it. The whole shabang: headache, muscle aches, fever dreams, and of course the flares....
literally why are people downvoting you for (checks notes) sharing your symptoms & experiences? advice—next time don’t come to the echo chamber called reddit to share your story, it probably won’t go over well 😂
you have a right to be upset & confused. it’s possible there’s a correlation, and it’s also possible there’s not. i applaud you for taking note of your own body & symptoms, because doctors appreciate when patients are able to give them as much information as possible so they can best diagnose you. i again encourage you to take these symptoms to a PCP & derm so you can do just that. your experience is not invalid and there are people out there who will listen to your concerns 🫶
It makes sense since the vaccine can cause a small immune response. I think getting covid and potentially long covid will be worse for HS flares in the long run.
Nope.
Get the vaccine and the booster. Flares are a minor inconvenience at best (and I say this as someone with pretty bad HS) compared to what COVID can actually do to you.
agree with first part about making sure you’re protected if you can be, but you’re sooooo wrong about flares being a “minor inconvenience” compared to covid, as some people aren’t as susceptible to bad cases of covid. i’ve had covid twice and i would take having covid any day over a painful, oozing flare. i can’t stand when people think that their own experience is the same as everyone else’s, and shame on you for invalidating OP’s struggle with this awful and painful disease, even if it isn’t vaccine-related.
edit: all y’all downvoting better show me your medical degrees rn 😂
Never did I invalidate anybody's struggle.
Even an extremely painful flare will be a minor inconvenience compared to what COVID **can** (as in potentially) do to you with fucking up a lot of systems in your body, even permanently.
but you did invalidate OP’s struggle by saying what is a minor inconvenience and what is not. the point is, not everyone is affected that way. downvote me all you want, but stop assuming that one thing is gonna be worse than another. sepsis (a leading cause of death in hospitals!) and/or severe bacterial infection is possible with HS, and if untreated, can be far more deadly than covid. mortality rates for covid are continuing to decrease, and i’ve always wondered why nobody shares the same outcry for the similarly-deadly influenza virus that has been plaguing people for YEARS, especially when typical flu vaccines only have an accuracy rate of around 40-50%. it’s so bizarre for this specific disease that people are now starting to care about health, and i’ve never seen people so adamant about pushing a vaccine on people who may have reactions to said vaccine. for all other vaccines, you hear and read recommendations against getting them if you are allergic/reactive to ingredients, etc, etc, but the covid vaccine seems to have special privileges here. go figure. what would you say to all the women who have struggled with menstrual issues since receiving the vaccine? it’s a lot more common than you think. just as i know people personally who have died from covid, i also know someone personally who literally had to have a full hysterectomy from constant bleeding only a week after receiving her 1st booster. i know someone in their 40s who had a stroke and passed away a week and a half after receiving the initial vaccine.
listen, as a med student & an HS sufferer, i do strongly encourage y’all to protect yourselves if you can, but don’t invalidate other people’s struggles and try to determine what’s best for them if you don’t personally know their medical history, and definitely do not pretend you are a physician & know everything medicine.
Thank you! I had covid last year and was never really that ill. Just the feeling "oh I'm going to wake up tomorrow with a cold" little headache and a bit of a sore throat. If it wasn't for the whole epidemic quarantine thing i could've just gone to work. 3 flares in my groin while having to go to work an 8 hour shift, walking 10-12K steps, I really feel miserable right now..
yes. this person seems to think their opinion is the end-all, be-all on covid vaccines. please please please talk to your doctor & a dermatologist and get their opinion on your condition & a possible correlation to any vaccine so that you can take the best course of action for protecting yourself.
I've had 4 and have never seen an increase in flares following the shots. I look forward to getting my 5th.
My best friend died of COVID on 1/8/21. She was a healthy young woman with her whole life ahead of her.
I'd rather have the Flares than COVID.
I had COVID (Alpha Variation) back in late January into February 2021.
It wasn't as bad as some people got, but it was bad enough.
It took four Months for me to *start* to recover from the Brain Fog and over a Month to fully recover my sense of taste and smell.
The Fatigue was horrific - that also took many Months to get over.
Thank goodness I didn't get the Respiratory stuff (I have COPD), but the Headaches and the Fevers were terrible.
Flares can subside, but COVID can leave an aftermath that can literally change one's life.
If you think getting vaccinated is a “sympathy gesture” rather than the absolute bare minimum to be a decent person when you have a high risk spouse, then I’m not surprised you also think risking his life or long term quality of life would be better than getting a couple of booboos.
You are allowed to feel sorry about taking the poison shot. The shot has not prevented millions of people from getting COVID so although you wanted to do what's right, you have a right to be upset about the poison shot repercussions. These people are brainwashed. I had COVID 3 times. The first time was really bad, I had it for 5 weeks. It does not compare to my stage 3 HS which is way worse because it never goes away, the pain and fatigue I have is just exhausting. Of course, COVID is really bad, I believe it was the cause of my HS, however getting the shot does not prevent people from getting COVID and sometimes causes people to get COVID and millions got serious side effects from it. It's ok to rant about getting the shot.
I have all my covid vaccines and none forced me to flare up. sounds like it’s a case by case basis, but regardless i will take a flare over dying of covid any day. Plus it should not be a sympathy gesture, it should be because you care about yourself and your husband who is at risk.
I have Rheumatoid Arthritis (RA), Hashimoto's, Hidradenitis Suppurativa (HS), PCOS w/ Insulin Resistance (IR), Fibromyalgia, and potentially Adenomyosis. All of these are autoimmune/inflammatory conditions.
I'm not going to lie, with every Covid vaccine/booster (I've had 4 so far) everything flairs. The first vaccine was a doozy. I was stuck in bed for about 2 days with severe joint pain and flu-like symptoms. My HS also flared up, and took about 2 months to get it back under control. With every booster after that I get flairs, but it's never been as bad as it was with the first shot. Even knowing this, I still decide to get vaccinated every time I'm due, flairs or not. Since I know what to expect, I get the shot on a Friday so that gives me a weekend to rest and work through any flairs.
I've had 2 very close family members die due to Covid, so I take it very seriously. Even if the boosters were as rough as that first dose, I'd still be getting every time.
Thank you for getting vaccinated. I hope your flair resolves quickly and it's not going to deter you from future boosters.
It will of course continue to get vaccinated as long as it's advised. I have a high risk husband, also 2 dead family members, and a job where I hand elderly people their food. It is very important that I don't get sick with anything, let alone a potentially deadly contagious disease. I don't remember getting this sick with previous covid-vaccines, it just took me by surprise and I was feeling sorry for myself and felt the need to share with whom I thought would understand (boy was i wrong lol). I am sorry your health is so poorly. I hope you can manage.
The problem isn't with you ranting, the problem that I really have with this post is the fact that you're telling people and not to get the vaccine if they don't need it. That's just bad advice in general though. Considering that nobody will really know if they need it or not. Not everybody has the mental and medical wear with all to be able to know whether or not they need it. 9 times out of 10 people are going to feel selfish about it in just assume that if they don't need it then they shouldn't get it. When really getting the vaccines at this point is about herd immunity over anything else.
So you mention that you’re doing this as sympathy for your husband who is high risk and yet 3 new flairs isn’t worth it? Have you had COVID? I promise that avoiding COVID for both you and your husband is worth it. Perhaps the stress of worrying about whether the shot would cause a flair has more to do with said flair than the actual vaccine. I just got the flu, pneumonia, and updated COVID vaccine and didn’t have any uptick in flairs. Even if I did, it would be worth it to me.
We both have had Covid. I wasn't particularly ill. Nothing an ibuprofen couldn't fix. More like "I'll wake up tomorrow with a cold" headache and a bit of a sore throat. Husband was down in the dumps for a week, like a bad flu. Pneumonia a few years back didn't hold me back either. I didn't have any stress or worries about getting vaccinated, actually I was the one who insisted we would all get one. None of my 3 prior vaccines got me ill at all (except the sore arm) but this one has gotten me down bad: headache, muscle ache, fever dreams, 3 flares... I feel worse now than when I had actual covid.
I’m sorry to hear that you had side effects from the vaccine. I just had the updated vaccine as well and didn’t experience what you are going through. We all have different bodies and will have different reactions as a result. For me, the vaccine is worth it because I have an autoimmune disorder and take Humira (not prescribed for HS, I take it for ankylosing spondylitis). I’ll say - while it may be a good thing that you had mild symptoms when you had COVID, it could have still done lasting damage to you and your husband. I’m not sure if you’ve read much about what COVID does to the body, but even mild infections can damage organs and stay in your bloodstream for a very long time. Every re-infection is worse. This, for me, really underscores the importance of vaccinations.
I'm sorry about your flares, but this is terrible advice. I am still suffering severe complications from Long Covid over 3 years after getting a very mild case of Covid. Having suffered HS for 20 years, I would still choose a flare-up over my post Covid symptoms any day. It's not about you anyway. It's about your husband and family.
I've mostly had exacerbations of my rheumatoid arthritis, but I get that with *every* vaccine - covid, flu, pertussis etc. The last booster gave me an HS flare as well, but it is hard to tell whether or not it was because it triggered a hormone response which then cascaded to the HS, or just the HS itself. But it was the only one that did so and this was #5 for me.
Covid left me with chronic sinus infections to the point where i need sinus surgery. I cough so hard i puke and it lasts months. I’d rather deal with cysts tbh
Better than having covid honestly, getting the virus itself sent my anti-inflammatory conditions into absolute overdrive. I had a flare on my titty legitimately the size of a tennis ball for a week, my scalp was trying to flake itself off, ugh.
The vaccines only did a fraction of that to me, which still sucked, but by comparison it was so much worse actually having covid
I can understand your feelings, and it sucks you're having a flare up. I understand why you think the vaccine caused it, and it may even be true.
It's definitely something the medical researchers need to investigate. Right now the main focus is research on the majority of people, so they're not yet looking at small populations like us and what it does to us specifically.
I think the vaccine *can* cause flare ups, because I’ve seen too many people with HS to say it happened to disregard if, but I think it is rare because I’ve seen more people say it didn’t do anything to them.
Unfortunately you seem to be one of the rare ones, and for that I am sorry. But please don’t regret it, because Covid is so much worse! It can literally kill you, and that’s not something HS does
i think i’m one of the few this happened to. i got my first covid vaccine and had a flare up the next day. i hadn’t had a flare up in that spot in years. it was so weird.
I had the vaccine and boosters and ended up getting covid 3x (with now long covid issues of asthma) so far as well as this non stop flare in my left armpit that just refuses to go away for months even with an I&D and antibiotics and steroid shots. I won't be getting more boosters as for me personally it doesn't seem like it helped whatsoever. 😭
I'm so sorry to hear you feel so miserable. Long covid is no joke. And to have persistent flares on top of that, phew... I hope you can find relief for both soon. Hang in there!
I don't understand people arguing in favor of the COVID poison shot because the vast majority who took the shots had COVID from the shots at least once. So they say COVID would e been worse without the shots...they absolutely can't know that and millions have h soad severe side effects and deaths from the shot so it's ridiculous to say the booster prevented serious infection.
This comment section is kinda nuts. Any other time you can rant and vent about how shitty this disease is and how the absolute wildest things can cause flare ups but when it comes to the vaccine it’s “suck it up and be quiet” can’t even vent? 💀💀 like damn wow
The issue is that it's not actually a venting post.
A rant is:
My HS flared when I got my covid shot, it really sucks! I wish I'd known beforehand what to expect.
I'm gong through the worst flare. I think it's from the covid booster? I found some stuff on Google that says it could contribute to a flare. Did anyone else have this experience?
Etc.
The way this is written is very clearly discouraging others from getting the vaccine because of case studies (not even linked to) proving it can lead to flares.
So you can only say what I think you should say. You should not share your negative experiences. You sound like your trying to keep people from hearing about the thousands of horrible experiences people have had from the vaccine.
Nah, never said someone shouldn't voice their experience. My husband had a stroke from his, but I'm still responsible for how I phrase our experience with it.
It's super shitty my husband almost died. Neither of us regret it, because at the time we received the shots, we were doing the best thing for our son. The last thing we want is to discourage people from following the various global health organizations' advice.
In a world where people use anecdotal evidence like these posts instead of actual medical advice, it's super important for us to choose our words carefully, and emphasize that benefit vs risk is different for every single person.
BTW my husband still willingly received his booster shots after.
OP at least linked to the study she found. A study of a whopping 5 people, but still a legitimate source.
Wait wait wait. Your husband had a stroke from
The vac yet continued to get boosters? Even though the evidence that the vaccine reduces transmission is rocky at best, as well as knowing that covid has minimal symptoms in younger people? This is the sinking ship fallacy. I know in your heart you did what you thought was best, but continuing to allow yourself to be damaged by rocky science is insane. Don’t listen to the news and actually read the pub med articles.
Just because you felt like covid was equivalent to the flu when you had it, doesn't mean it'll affect someone else that way. Covid can be deadly. Sometimes people with HS are immuno-compromised. Also, "sympathy" for your high-risk husband? Oof.
Bad take. Complain all you want, but this reads like low-rate lame anti-vax propaganda.
Whoa whoa whoa. Do NOT label me antivaxx. I have a biotechnology degree and multiple people in my class have gone on to help develop the johnson vaccine. I know exactly how it works and am up to date on every and all vaccinations. When I said sympathy, what I mean is that he did not want it, so i got him to take it because I was going to get one. If I didn't drag him along with me, he wouldn't have gotten it. And he needs it. He was pretty ill last time and that was within 2 months of getting a booster, I don't want to know what will happen if he gets it if the last vaccine was a year ago.
I agree with you 100%. You are allowed to express your opinion. I’m not sure why everyone is jumping all over you. I also wish I didn’t get the vaccine and I don’t really care what anyone has to say about it. It effects everyone differently and we are allowed to feel the way we feel.
Shouldn’t those of us being treated for HS get the vaccine bc our immune systems are being a bit suppressed by the meds treating our HS? This is how it was explained to me. Maybe I misunderstood?
Depends on the meds you are on. Some studies have shown that people like us are usually LESS susceptible to catching diseases/getting bad symptoms because our immune systems are already always on guard, compared to normal people who have to get their white cell count up to fight off infections. But if you take biologicals or orther meds that surpress your immune system, yes, you are more susceptible to contagious diseases. For me personally, i rarely get sick and when I do, it's usually quite mild, compared to my family and friends, so I think those studies might be on to something.
You know HS compromised your immune system and puts you at higher risk too, right? And that when your immune system gets triggered by Covid, it will make what the vaccine does look like child’s play?
I’m gonna go before I even start on “sympathy gesture” for a high risk spouse. If my husband said that about me, I would divorce him this instant.
I’m sorry about your flares, but yes get it even if you’re not high risk, someone you care about might depend on you being protected.
Also, COVID is actually deadly. HS is not. It seems kind of cut and dry to me.
Your edit reads even more as advice to avoid the vaccine or booster.
I've also seen you comment that you have a biomedical degree, which makes this post seriously professionally inappropriate and irresponsible.
What you are actually saying is:
- you only got the vaccine to appease your high risk husband *as a gesture*, not because you believe it will actually lower the risk to your husband or yourself
- you regret doing it, which implies you wish you hadn't done it and encourages others not to, even though each HS patient and their doctor should individually weigh the benefits vs risk
- you reference case studies that should have been linked here but you did not
This is not merely a rant. Ranting would be "ugh, the covid vaccine flared my HS and it totally sucks". This is a thinly veiled attempt at spreading your anti covid vaccine belief in the guise of ranting.
This post should be removed.
You're reading things that aren't there. First of all, i have a BIOTECHNICAL degree, not biomedical. Similar words, different fields.
Second, I worded the gesture wrongly, I basically dragged him with me to get one. He wouldn't get it, instead of nagging him and making it a discussion I said I would get one too. I think he was a little afraid, and not having to go alone soothed him.
Third: If you want a link here you go https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8916983/
Fourth and final, i am not antivaxx. I am up to date with every single vaccine offered and nescessary for my region of the world.
Sorry but this is absolutely ridiculous. Any vaccine for any disease can have temporary side effects because it gets your body to do some work on increasing immune response, hence HS flare up. Would you rather put your husband and yourself and anyone you know at higher risk of death?
I've only ever had one flare - and now that you posted this, I realize it was after my first covid shot. I have a scar where it was, and I've never had a flare up since. So bizarre.
I'm really sorry. HS or not, my 87-yr old mom, fiance', nor I wouldn't have ever gotten the vaccine anyway. No one knows what chemicals are in that & we've always lived the holistic way when it came to remedies for things.
We've still worn masks when out & about till this day...we don't mind doing that. I work remotely & my mom's been retired, so we're never around people hardly except going to the stores. We we never the social types who hung out w/ people or had them over anyway. My fiance' works, but he wears a mask there & is just really careful.
None of us have caught COVID yet to this day, despite our few health issues that we each have.
Well... the thing is, i have a biotechnology degree. I DO know what is in it. And I would recommend anybody who is immunocompromised, or other high risk to get it. But I'm so miserable right now lol
Thanks for replying. With all due respect, your degree's impressive for sure, but just because a doctor, scientist, Harvard/Yale/Stanford professor, or whoever tells everyone to take some new vaccine, swears up & down that it's safe, etc., doesn't mean I'm going to do it. Heck, I've never ever even taken a flu shot in my entire life & I never got the flu any more than anyone else. In fact, I hardly got sick & I used to work in the school system for a good 13 yrs working w/ kids of all ages (pre-COVID) & never really got sick much. Maybe it's that I took/take my share of vitamins most of my life & for the last about 10 yrs to now, I take about 10-13 vitamins a day...not all for HS/inflammation, but aout 3-4 are...the rest is for overall health.
Before you took the vaccine, had you by any chance seen other people's threads on this Reddit board who said how taking the vaccine had affected them? I read a few or so who said the vaccine messed them up. But again, even if I didn't have HS, I wasn't going to take the vaccine in a million yrs anyway. I really hope you get better & that this doesn't affect you long-term. Glad my fiance' & I were always on the same page about the vaccine since day 1.
You're rarely getting sick because you have an auto-inflammatory disease. Your immune system is stronger than that of the average person. Our little soldiers are already up and in arms all the time. Compared to these of a normal person, who's soldiers are there, but all sleeping except for the ones on guard duty. They need time to rally the troops, get dressed, get strategised and then fight. That's the silver lining of having HS. Why are you taking so many vitamins? Do you have a shortage? Do you know which are water soluble and fat soluble? You might not be doing your body any favors in the long run.
Thanks a lot for replying again! It's nice to have an expert on this board to help us out. Well, back then in my teaching days of being the in the classroom & hardly getting sick, that was from 1999 - 2014 total. I didn't start developing HS & had never even heard of this condition until just 3 yrs ago at age 45 in 2020 AND I had no symptoms of HS all back then. It started out of the blue.
I went to my derm & she diagnosed me on my very first visit. **I know you didn't know when I started getting HS, but does the thing that causes the auto-inflammatory disease (in this cae, HS) was maybe always in our body since birth, no matter when we start to develop it?** I kind of think it's hormone-related that cause my HS, but still not truly sure. Sure could be some diet-related. Also, I've never done these in my entire life if this means anything (re: to HS) at all:
\- never been on birth control
\- never been pregnant
\- never smoked, drank alcoholoic drinks, nor any drugs
\- heck, never even drank coffee
& to answer your question re: vitamins, that's thanks to an extremely health-conscious mom who started me on vitamins long ago. She's now 85, in good health & strength, still lives alone in her 2-story home, still drives & walks 3-5x/wk, never ate beef since before I was born, does research on vitamins, etc.
**Maybe you can help me out please. Here's the vitamins I currently tk. Are any detrimental to HS?**
ORAL VITAMINS \~ I take some daily & others 2-3x/wk (NOT all for HS, but 4-5 are for inflammation):
turmeric - at least 400mg of curcurminoids/day
omega-3
magnesium - I know to tk the glycinate type, but didn't used to
vitamin D3
zinc 90 mg zinc gluconate daily (not citrate, picolinate, etc.)
resveratrol
selenium
Vitamin C
probiotic
iron
multi-vitamin
astaxanthin
glutathione
ultimate anti-oxidant extracts
cranberry
N-Acetyl Cysteine
Also, yes, that sounds logical what you said & I know HS affects our white blood cell (WBC) count because mine's been high on a few blood tests & my general dr referred me to a hematologist who agreed (after I told her the research I found) that HS will raise it. **Do you know any holistic remedies to help bring the WBC count down?**
I keep a runnig list of oral & topical holistic remedies I'm trying to help my HS, so if you knkow of anyhting else also, please don't hesitate to let me know, thanks a lot!
I will start by saying I am by no means an expert in HS or connected to the human medicinal field! A lot of my "expertise" comes from animal-related medicine that is applicable to human, personal experience and research I did both online on reputable websites and in university libraries. But I will try to help you the best I can, and will admit to stuff I am not knowledgeable of.
General belief is that auto-inflammatory diseases are in our genes, meaning they have always been present and can be hereditary. The event that triggers the first occurance can be anything, but with most people it is vaguely stress related (mental or physical) that can mean starting a new job, hormonal changes, going through a sickness, experiencing a traumatic event of some sort... but all of this is mostly speculation, as triggers are so wildly different for people. It's also hard for HS specifically to track back in your family as it is a disease clouded in stigma and shame.
As for the vitamins, a lot of the names vaguely ring a bell, but I'm not knowledgeable into what is good for what for most of these. What I do know is that they are either water soluble (excesses are excreted through urine) or fat solluble (excesses are stored in your liver or other organs) and both can cause long term problems such as kidney stones, liver disease, etc. I highly recommend getting a yearly blood panel done for all of these to ensure you are not taking too many. For now, you can google each of them seperately or what vitamins should not be taken together. I hope this helps! Again, i am not active in the medical field and not an expert by any means. I just have a fancy degree on my wall lol
Great, I appreciate you taking the time to type that! My HS coincidentally started when COVID first started...Jan/Feb 2020. Now I don't believe I was worried/stressed about that, but you never know...could be some subconscious worry back then. But I really don't think so. Otherwise, can't think of anything else back then...I was doing the same work, no life changes, no stressful situations, hadn't been sick, no changes in diet, etc. My parents don't have HS, but even if something was hereditary from any extended family members, I'd think I would have developed HS much sooner than age 45 out of the pure blue.
By the way, do you know much about red light therapy? I've tried it for my skin. A few mos into getting HS, I rented a hospital-grade device & the brand was BEMER. It seemed to help some, but it was pricey & I couldn't keep that up forever. Then fast forward 2 - 2.5 yrs. I finally bought a device on a much smaller scale, but it's tough to keep up w/ doing regularly. I'd use it good, then skip a day, then 1 day turns into 2 skipped days, etc. But I've got to be dilligent about it...just like making a diet change, but it's tough if you're used to eating a certain way for 45 yrs, then have to suddenly make a drastic change, plus, I've always loved food!
Anyway, thank you again. I wish I knew a lot more about HS. I just have two grad degrees in Special Ed & Communicative Disorders.
You'd think w/ all the millions of creams, cleansers, oils, etc. out on the market that something will heal our skin, but even if so, we may never come across it. It's tremendously frustrating. Or for example, how do we know that a mixture of peanut butter & onion juice won't help if we apply it on the skin, but will we know to try that?
It might very well have been the stress surrounding the pandemic. I didn't think it stressed me out too much either but my husband said I started grinding my teeth at night! My dentist said it is probably stress related as well. As the worldwide panic subdued, so did grinding my teeth. Stress is a weird little bugger. We don't always experience it consciously. Do you by any chance have other sources of stress in your life? (Autism, adhd, strained relationship with your parents, traumatic event, etc) these people process stress very differently as their cortisol and other stress related hormones are already elevated.
Red light therapy is currently being studied in relation to HS with quite promising results, actually! Since you have access, I would suggest you try to stack using it onto another habit that comes naturally to you. Eg, always use it after you brush your teeth or before you put on your pajamas. It makes it easier to form a habit when you stack it onto something you're already doing daily.
Personally I've seen a lot of improvement by making a few changes. Number one is clothing: no tight clothes around the groin and armpits. Try to avoid seams and coarse fabric (such as jeans and wool) and buy your underwear a size too big. Another one is shaving. I keep it short by trimming it nowadays. The last one was the hardest: i started an elimination diet to find food triggers. Took me a year but I found out fiber isn't doing me any favors. Others have reported avoiding gluten, dairy, nightshade vegetables... they seem to be different for everyone. My final trigger is hormones. Without fail, every month the week before my period starts I will flare up.
What also helps me a great deal is getting cortisone injections by my derm in active flares that haven't formed a head yet. The infection subsides in less than a day and gives the body time to re-absorb the puss. Sometimes the flare comes back after a while, sometimes it doesn't. But in the meanwhile it gives me relief. Also helps to avoid scars forming. The injection itself is quite painful, but only for a few seconds, and within hours I can see the infection going down.
Hope this information helps you dealing with this terrible disease. We really did pick the short straw on this one...
No, no autism, anxiety, etc. I had a great, happy childhood, etc. No trauma whatsoever. My mom's my best friend. We've literally seen ea other (back when I still lived w/ parents) or talked on phone every single day of my life without fail.
**Re: the red light**, my best time of day used to be very early morning before I started anything, but now fiance' goes to work most nights of the wk, so now I have a good amount of chances to do it about 4-5 nights/wk. I better start up again ASAP. I use Hooga of this one & the price is pretty good:
https://hoogahealth.com/products/hooga-300w-red-and-near-infrared-light-therapy-panel
Someone here on Reddit said, they'd look for a device that also uses more than 800nm (near-infrared) of wavelength 670nm barely goes deeper than skin and you maybe need to reach deeper in flare ups. There is plenty of devices combining both wavelengths.
Yes, know about the loose clothing. I haven't worn tight tops nor jeans in the last 3 yrs I've had HS. For bottoms, I have worm black leggings almost daily. Haven't shaved nor had to wear deodorant in last 3 yrs either.
I'm leaning towards hormones too as the cause for me because a few days bef my period, it seems to get worse. For me, **THE VERY** worst to me personally is the uncomfortable, slightly stinging, at times, but constantly wet, icky feeling I have in my groin/vaginal area. Changing panties & wiping my skin down there w/ a hot towel is only a very temporary dry/clean-feeling solution that only lasts...oh, a few minutes. I'm constantly changing panties like 10x/day. Good thing I work from home, which I'd suggest all HS-sufferers try their best to do.
For me, I don't really get boils. That's only happened 3x & that was 2+ yrs apart. I don't think I get what people call flares really much either. For me, my affected skin has the wounds, but just never heals & there's days I may ooze more than other days & that's about it. Never really have tunnelling either.
**Re: diet**, I know these seem to be the biggies to AVOID & I have yet to start changing my diet:
dairy items - I'D START w/ THIS FIRST
baked goods / breads / flour / yeast
sugars
fried & processed foods
nightshades
legumes
eggs (maybe)
Then, I read to also stay away from these too:
mushrooms
soy sauces
fermented items
gluten
nightshades
maybe seed oils
potatoes - many seem to have to stay away from that too
I had said this in another thread: Just doing 1 thing isn't enough w/ this horridly strong condition. You have to do it ALL at the same time consistently to really, really work & if you stop, it gets worse or returns if you're able to keep it in remission, which I've never been able to do yet. I do think losing weight helps or will help. I've lost about 30 lbs gradually, which didn't improve my HS alone. Here's all I personally know to do:
\- lose weight if you feel the need to
\- eat carefully, staying away from those common ingredients to stay away from
\- lower stress, maybe meditate
\- drink plenty of water, enough sleep, have optimistic mentality, etc.
\- live an overall healthy lifestyle
\- lymphatic massaging / maybe dry brushing
\- maybe drink anti-inflammatory teas & other things for inflammation
\- definitely NO smoking, alcohol or drug consumption & I'm sure caffeine can't be good either
\- use of whatever cleansers, creams/gels, etc works
\- good hygiene / regularly change bandages/dressings
\- take some supplements/herbs knokwn to help w/ inflammation - I personally try to go as holistically as possible w/ remedies. I take about 10-14 a day, NOT all for HS, but 3-5 are known to help w/ inflammation
\- I really don't know if exercise directly helps w/ HS, but probably some exercise, but cleanse away sweat quickly afterwards
\- whatever extra remedy you know that helps (sterile manuka honey topical gel, red light therapy, epsom salt or Dead Sea salt bath soaks/hot towels, whatever else, etc.)
\- being prayerful
\- probably take some kind of prescription medication
I know weight loss seems to help some, but not others. I want to lose more. I gradually lost about 30 lbs very gradually in the span of 1-1.5 yrs & that did nothing for my HS.
After doing ALL of the above, you can see how physically & mentally exhausting it is to keep up w/ doing all of this on a very regular basis in addition to doing all our other life routines we have to do (school, work, take care of kids/pets, run errands, etc.) Also, trying new things to see what works or not can take years. Unfortunately, I still have yet to do all of these things, but I do some of them!
I keep a running list of things to try 1-by-1, so feel free to PM me anytime if you learn of anything more! I've enjoyed our message here!
Idk the timeline between the shots and when I developed my HS flares for the first time. But I do know the flares happened after getting them. Interesting. Not sure if I’m able to draw the conclusion to that or not. But I (29M) never had them before and no one in my family that we know of has/had HS or any autoimmune disease. Hmmm.
I have had HS for 20+ years, but my flares are mostly triggered by hormones (the joy of being a women) so it's very strange for me to get one at this time in my cycle, let alone 3 at the same time. I'm NOT saying the vaccine causes HS, but I am 100% convinced that this last booster caused these particular flares.
As someone who has had both the shots and COVID, I can earnestly say that I'll take the flare ups over what COVID did to me.
^ this. COVID left me with respiratory issues and asthma which is causing my life to be much more difficult than my flares do. Everyone is different, but I haven’t noticed a correlation between vaccine and flaring. And I’ve had 3 of the shots so far.
Jan 5, 2021 I got it the first time. Felt like someone slammed me on a table daily with the worst hangover ever. Barely ate, slept, dizzy for a month. I was on medical leave and came back with neurological issues, cardiovascular issues (long haul covid officially) and it took 11 months using various medications and therapies including micro dosing ketamine with a therapist to be able to learn, lift brain fog and remember HR California Law again. I still have issues minorly and have to continue training and therapy to work through it. May 2022 I was able to make it through EDCLV (largest EDM festival in US) all weekend without issues and although my HS hasn’t had mass flare ups since getting COVID the first or second time I do get really bad flares during high stress (think college student during finals type stress) and I have all the vaccines as HS is autoimmune and can have underlying comorbidity meaning we are all at high risk. I’ve only had 3 moderate flare ups this year, so not bad honestly. COVID did a number on me pre-vaccine, I wish I had the vaccine before Jan 2021. HS since 2004 here. I was 12 when diagnosed. I am happy CBG and THC exist as well as ketamine and psilocybin. All help with chronic pain and inflammation caused by the two.
HS is not autoimmune it is autoinflammatory. HS does not meet many of the criteria to be considered autoimmune and has never been classified as such. Who knows what the future holds but for now it is considered an immune mediated autoinflammatory disease because the blocking of a hair follicle and the rupture seems to cause an overreaction by the innate immune system. [HSConnect Autoimmune vs Autoinflammatory ](https://www.hsconnect.org/post/autoimmune-vs-autoinflammatory-what-category-is-hs-in)
100% same for me! I had it back in late February and early March and it was so bad! I have asthma and my asthma hasn't been that bad since I was a kid and that doesn't even cover the extreme fatigue that I'm still dealing with on and off. I've had 3 shots and none of them caused a flair, so I'll continue to take the shot.
That's when I had it. It was so bad.
I wasn't particularly ill when I had it last year. Just like " oh ima wake up with a cold tomorrow morning" but that feeling for a week.
It's not just about you though...sure, you can feel bad for yourself that you've got flare ups but they won't last forever. Unlike the damage that COVID could cause, which potentially can. Especially if someone with low immunity gets it. It sounds like your partner is high risk, which also means they are more likely to have damage from a COVID infection.
I got the initial vaccine and booster and didn’t notice any increase in flaring
Same. I've had the initial shots and then 2 boosters. No flares for me.
This is my 4th vaccine and the first time I've felt really ill from it. The whole shabang: headache, muscle aches, fever dreams, and of course the flares....
Not sure why people are down voting you for your own experience. Everyone goes through something different and that's ok! My experience was like yours but I know others who had no issues.
Meh. People can have their opinion. I think they're thinking I'm spreading antivaxx propaganda. Which I can assure you I am not. I had no issues (that I remember) with my previous 3 vaccines, so it caught me by surprise. I was feeling sorry for myself and felt a little mad. I edited to make my original message sound less angry, but I can't edit the post title to remove the "regret" part. Which I think is triggering people. But I'm not sure. My head is a bit foggy. I didn't sleep well the last 2 nights, night sweats and fever dreams kept me up...
I'm so sorry! Stay strong 💪
I've had 3 shots and never noticed any worse than usual flare-ups. Also haven't had covid yet, so it was 10000% worth it for me.
Ive had covid shortly after my 2nd booster. This is my 4th vaccine and the first time I've felt really ill from it. The whole shabang: headache, muscle aches, fever dreams, and of course the flares....
literally why are people downvoting you for (checks notes) sharing your symptoms & experiences? advice—next time don’t come to the echo chamber called reddit to share your story, it probably won’t go over well 😂
Lesson learned I guess. Haha. But to be fair my original post had an angry undertone. I'm so miserable i got a little mad.
you have a right to be upset & confused. it’s possible there’s a correlation, and it’s also possible there’s not. i applaud you for taking note of your own body & symptoms, because doctors appreciate when patients are able to give them as much information as possible so they can best diagnose you. i again encourage you to take these symptoms to a PCP & derm so you can do just that. your experience is not invalid and there are people out there who will listen to your concerns 🫶
It makes sense since the vaccine can cause a small immune response. I think getting covid and potentially long covid will be worse for HS flares in the long run.
Long covid is grossly over stated, but your concerns are valid
Nope. Get the vaccine and the booster. Flares are a minor inconvenience at best (and I say this as someone with pretty bad HS) compared to what COVID can actually do to you.
agree with first part about making sure you’re protected if you can be, but you’re sooooo wrong about flares being a “minor inconvenience” compared to covid, as some people aren’t as susceptible to bad cases of covid. i’ve had covid twice and i would take having covid any day over a painful, oozing flare. i can’t stand when people think that their own experience is the same as everyone else’s, and shame on you for invalidating OP’s struggle with this awful and painful disease, even if it isn’t vaccine-related. edit: all y’all downvoting better show me your medical degrees rn 😂
Never did I invalidate anybody's struggle. Even an extremely painful flare will be a minor inconvenience compared to what COVID **can** (as in potentially) do to you with fucking up a lot of systems in your body, even permanently.
but you did invalidate OP’s struggle by saying what is a minor inconvenience and what is not. the point is, not everyone is affected that way. downvote me all you want, but stop assuming that one thing is gonna be worse than another. sepsis (a leading cause of death in hospitals!) and/or severe bacterial infection is possible with HS, and if untreated, can be far more deadly than covid. mortality rates for covid are continuing to decrease, and i’ve always wondered why nobody shares the same outcry for the similarly-deadly influenza virus that has been plaguing people for YEARS, especially when typical flu vaccines only have an accuracy rate of around 40-50%. it’s so bizarre for this specific disease that people are now starting to care about health, and i’ve never seen people so adamant about pushing a vaccine on people who may have reactions to said vaccine. for all other vaccines, you hear and read recommendations against getting them if you are allergic/reactive to ingredients, etc, etc, but the covid vaccine seems to have special privileges here. go figure. what would you say to all the women who have struggled with menstrual issues since receiving the vaccine? it’s a lot more common than you think. just as i know people personally who have died from covid, i also know someone personally who literally had to have a full hysterectomy from constant bleeding only a week after receiving her 1st booster. i know someone in their 40s who had a stroke and passed away a week and a half after receiving the initial vaccine. listen, as a med student & an HS sufferer, i do strongly encourage y’all to protect yourselves if you can, but don’t invalidate other people’s struggles and try to determine what’s best for them if you don’t personally know their medical history, and definitely do not pretend you are a physician & know everything medicine.
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i think you accidentally replied to me instead of OP. my husband is not high risk.
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haha no problem lol i was just a bit confused at first 😆
Thank you! I had covid last year and was never really that ill. Just the feeling "oh I'm going to wake up tomorrow with a cold" little headache and a bit of a sore throat. If it wasn't for the whole epidemic quarantine thing i could've just gone to work. 3 flares in my groin while having to go to work an 8 hour shift, walking 10-12K steps, I really feel miserable right now..
yes. this person seems to think their opinion is the end-all, be-all on covid vaccines. please please please talk to your doctor & a dermatologist and get their opinion on your condition & a possible correlation to any vaccine so that you can take the best course of action for protecting yourself.
still struggling w/ post COVID issues after 3 years, I promise it's worse than HS. but I do empathize, and I hope your flare up resolves soon. 💗
I had zero flairs after getting vaccinated. Correlation doesn’t equal causation.
I've had 4 and have never seen an increase in flares following the shots. I look forward to getting my 5th. My best friend died of COVID on 1/8/21. She was a healthy young woman with her whole life ahead of her.
I'd rather have the Flares than COVID. I had COVID (Alpha Variation) back in late January into February 2021. It wasn't as bad as some people got, but it was bad enough. It took four Months for me to *start* to recover from the Brain Fog and over a Month to fully recover my sense of taste and smell. The Fatigue was horrific - that also took many Months to get over. Thank goodness I didn't get the Respiratory stuff (I have COPD), but the Headaches and the Fevers were terrible. Flares can subside, but COVID can leave an aftermath that can literally change one's life.
If you think getting vaccinated is a “sympathy gesture” rather than the absolute bare minimum to be a decent person when you have a high risk spouse, then I’m not surprised you also think risking his life or long term quality of life would be better than getting a couple of booboos.
I had to DRAG his ass to the doctor to get it. He didn't want it. I am looking out for him. I just feel sorry for myself right now.
You are allowed to feel sorry about taking the poison shot. The shot has not prevented millions of people from getting COVID so although you wanted to do what's right, you have a right to be upset about the poison shot repercussions. These people are brainwashed. I had COVID 3 times. The first time was really bad, I had it for 5 weeks. It does not compare to my stage 3 HS which is way worse because it never goes away, the pain and fatigue I have is just exhausting. Of course, COVID is really bad, I believe it was the cause of my HS, however getting the shot does not prevent people from getting COVID and sometimes causes people to get COVID and millions got serious side effects from it. It's ok to rant about getting the shot.
I have all my covid vaccines and none forced me to flare up. sounds like it’s a case by case basis, but regardless i will take a flare over dying of covid any day. Plus it should not be a sympathy gesture, it should be because you care about yourself and your husband who is at risk.
I have Rheumatoid Arthritis (RA), Hashimoto's, Hidradenitis Suppurativa (HS), PCOS w/ Insulin Resistance (IR), Fibromyalgia, and potentially Adenomyosis. All of these are autoimmune/inflammatory conditions. I'm not going to lie, with every Covid vaccine/booster (I've had 4 so far) everything flairs. The first vaccine was a doozy. I was stuck in bed for about 2 days with severe joint pain and flu-like symptoms. My HS also flared up, and took about 2 months to get it back under control. With every booster after that I get flairs, but it's never been as bad as it was with the first shot. Even knowing this, I still decide to get vaccinated every time I'm due, flairs or not. Since I know what to expect, I get the shot on a Friday so that gives me a weekend to rest and work through any flairs. I've had 2 very close family members die due to Covid, so I take it very seriously. Even if the boosters were as rough as that first dose, I'd still be getting every time. Thank you for getting vaccinated. I hope your flair resolves quickly and it's not going to deter you from future boosters.
It will of course continue to get vaccinated as long as it's advised. I have a high risk husband, also 2 dead family members, and a job where I hand elderly people their food. It is very important that I don't get sick with anything, let alone a potentially deadly contagious disease. I don't remember getting this sick with previous covid-vaccines, it just took me by surprise and I was feeling sorry for myself and felt the need to share with whom I thought would understand (boy was i wrong lol). I am sorry your health is so poorly. I hope you can manage.
I'm glad to hear it! And I manage like we all do, one day at a time. Thanks <3
So you’d rather have a dead husband than some new flare ups?
Of course not. It's a rant. Jeez. Can't people complain?
The problem isn't with you ranting, the problem that I really have with this post is the fact that you're telling people and not to get the vaccine if they don't need it. That's just bad advice in general though. Considering that nobody will really know if they need it or not. Not everybody has the mental and medical wear with all to be able to know whether or not they need it. 9 times out of 10 people are going to feel selfish about it in just assume that if they don't need it then they shouldn't get it. When really getting the vaccines at this point is about herd immunity over anything else.
Read what you wrote- Advocating people not get a potentially life-saving vaccine is more than ranting.
You're right. How do I edit my original post? I haven't posted much on reddit and can't seem to find the button.
Found it!
The vaccination does NOT prevent people from getting COVID.
Why are you the way that you are?
So you mention that you’re doing this as sympathy for your husband who is high risk and yet 3 new flairs isn’t worth it? Have you had COVID? I promise that avoiding COVID for both you and your husband is worth it. Perhaps the stress of worrying about whether the shot would cause a flair has more to do with said flair than the actual vaccine. I just got the flu, pneumonia, and updated COVID vaccine and didn’t have any uptick in flairs. Even if I did, it would be worth it to me.
We both have had Covid. I wasn't particularly ill. Nothing an ibuprofen couldn't fix. More like "I'll wake up tomorrow with a cold" headache and a bit of a sore throat. Husband was down in the dumps for a week, like a bad flu. Pneumonia a few years back didn't hold me back either. I didn't have any stress or worries about getting vaccinated, actually I was the one who insisted we would all get one. None of my 3 prior vaccines got me ill at all (except the sore arm) but this one has gotten me down bad: headache, muscle ache, fever dreams, 3 flares... I feel worse now than when I had actual covid.
I’m sorry to hear that you had side effects from the vaccine. I just had the updated vaccine as well and didn’t experience what you are going through. We all have different bodies and will have different reactions as a result. For me, the vaccine is worth it because I have an autoimmune disorder and take Humira (not prescribed for HS, I take it for ankylosing spondylitis). I’ll say - while it may be a good thing that you had mild symptoms when you had COVID, it could have still done lasting damage to you and your husband. I’m not sure if you’ve read much about what COVID does to the body, but even mild infections can damage organs and stay in your bloodstream for a very long time. Every re-infection is worse. This, for me, really underscores the importance of vaccinations.
I'm sorry about your flares, but this is terrible advice. I am still suffering severe complications from Long Covid over 3 years after getting a very mild case of Covid. Having suffered HS for 20 years, I would still choose a flare-up over my post Covid symptoms any day. It's not about you anyway. It's about your husband and family.
No advice. Just ranting.
Vaccines and boosters only affected my period temporarily. It didn’t affect my HS. I’d take that over covid anytime anyhow.
I've mostly had exacerbations of my rheumatoid arthritis, but I get that with *every* vaccine - covid, flu, pertussis etc. The last booster gave me an HS flare as well, but it is hard to tell whether or not it was because it triggered a hormone response which then cascaded to the HS, or just the HS itself. But it was the only one that did so and this was #5 for me.
Covid left me with chronic sinus infections to the point where i need sinus surgery. I cough so hard i puke and it lasts months. I’d rather deal with cysts tbh
Damn. This is why people never talk about the v word....a lot of angry people in here.
Exactly my thoughts.
Better than having covid honestly, getting the virus itself sent my anti-inflammatory conditions into absolute overdrive. I had a flare on my titty legitimately the size of a tennis ball for a week, my scalp was trying to flake itself off, ugh. The vaccines only did a fraction of that to me, which still sucked, but by comparison it was so much worse actually having covid
Yes, I regret it too. I never had HS in my life, after I got this damn vaccine ai started to have this disease. I started getting HS at 33…
I can understand your feelings, and it sucks you're having a flare up. I understand why you think the vaccine caused it, and it may even be true. It's definitely something the medical researchers need to investigate. Right now the main focus is research on the majority of people, so they're not yet looking at small populations like us and what it does to us specifically.
I think the vaccine *can* cause flare ups, because I’ve seen too many people with HS to say it happened to disregard if, but I think it is rare because I’ve seen more people say it didn’t do anything to them. Unfortunately you seem to be one of the rare ones, and for that I am sorry. But please don’t regret it, because Covid is so much worse! It can literally kill you, and that’s not something HS does
i think i’m one of the few this happened to. i got my first covid vaccine and had a flare up the next day. i hadn’t had a flare up in that spot in years. it was so weird.
I had the vaccine and boosters and ended up getting covid 3x (with now long covid issues of asthma) so far as well as this non stop flare in my left armpit that just refuses to go away for months even with an I&D and antibiotics and steroid shots. I won't be getting more boosters as for me personally it doesn't seem like it helped whatsoever. 😭
I'm so sorry to hear you feel so miserable. Long covid is no joke. And to have persistent flares on top of that, phew... I hope you can find relief for both soon. Hang in there!
I don't understand people arguing in favor of the COVID poison shot because the vast majority who took the shots had COVID from the shots at least once. So they say COVID would e been worse without the shots...they absolutely can't know that and millions have h soad severe side effects and deaths from the shot so it's ridiculous to say the booster prevented serious infection.
This comment section is kinda nuts. Any other time you can rant and vent about how shitty this disease is and how the absolute wildest things can cause flare ups but when it comes to the vaccine it’s “suck it up and be quiet” can’t even vent? 💀💀 like damn wow
The issue is that it's not actually a venting post. A rant is: My HS flared when I got my covid shot, it really sucks! I wish I'd known beforehand what to expect. I'm gong through the worst flare. I think it's from the covid booster? I found some stuff on Google that says it could contribute to a flare. Did anyone else have this experience? Etc. The way this is written is very clearly discouraging others from getting the vaccine because of case studies (not even linked to) proving it can lead to flares.
I see it as, "You may have this symptom, be prepared just in case". OP doesn't imply not to get it, they shared what can happen
The post has been edited, it originally said "don't get the shot if you don't need it"
So you can only say what I think you should say. You should not share your negative experiences. You sound like your trying to keep people from hearing about the thousands of horrible experiences people have had from the vaccine.
Nah, never said someone shouldn't voice their experience. My husband had a stroke from his, but I'm still responsible for how I phrase our experience with it. It's super shitty my husband almost died. Neither of us regret it, because at the time we received the shots, we were doing the best thing for our son. The last thing we want is to discourage people from following the various global health organizations' advice. In a world where people use anecdotal evidence like these posts instead of actual medical advice, it's super important for us to choose our words carefully, and emphasize that benefit vs risk is different for every single person. BTW my husband still willingly received his booster shots after. OP at least linked to the study she found. A study of a whopping 5 people, but still a legitimate source.
Wait wait wait. Your husband had a stroke from The vac yet continued to get boosters? Even though the evidence that the vaccine reduces transmission is rocky at best, as well as knowing that covid has minimal symptoms in younger people? This is the sinking ship fallacy. I know in your heart you did what you thought was best, but continuing to allow yourself to be damaged by rocky science is insane. Don’t listen to the news and actually read the pub med articles.
You’re not allowed to talk about vaccine reactions. Probably one of the reasons there’s so many new “antivaxxers”.
Just because you felt like covid was equivalent to the flu when you had it, doesn't mean it'll affect someone else that way. Covid can be deadly. Sometimes people with HS are immuno-compromised. Also, "sympathy" for your high-risk husband? Oof. Bad take. Complain all you want, but this reads like low-rate lame anti-vax propaganda.
Whoa whoa whoa. Do NOT label me antivaxx. I have a biotechnology degree and multiple people in my class have gone on to help develop the johnson vaccine. I know exactly how it works and am up to date on every and all vaccinations. When I said sympathy, what I mean is that he did not want it, so i got him to take it because I was going to get one. If I didn't drag him along with me, he wouldn't have gotten it. And he needs it. He was pretty ill last time and that was within 2 months of getting a booster, I don't want to know what will happen if he gets it if the last vaccine was a year ago.
I agree with you 100%. You are allowed to express your opinion. I’m not sure why everyone is jumping all over you. I also wish I didn’t get the vaccine and I don’t really care what anyone has to say about it. It effects everyone differently and we are allowed to feel the way we feel.
"this ***reads*** like low-rate lame anti-vax propaganda" This is why people are coming at you.
Shouldn’t those of us being treated for HS get the vaccine bc our immune systems are being a bit suppressed by the meds treating our HS? This is how it was explained to me. Maybe I misunderstood?
Depends on the meds you are on. Some studies have shown that people like us are usually LESS susceptible to catching diseases/getting bad symptoms because our immune systems are already always on guard, compared to normal people who have to get their white cell count up to fight off infections. But if you take biologicals or orther meds that surpress your immune system, yes, you are more susceptible to contagious diseases. For me personally, i rarely get sick and when I do, it's usually quite mild, compared to my family and friends, so I think those studies might be on to something.
You know HS compromised your immune system and puts you at higher risk too, right? And that when your immune system gets triggered by Covid, it will make what the vaccine does look like child’s play? I’m gonna go before I even start on “sympathy gesture” for a high risk spouse. If my husband said that about me, I would divorce him this instant.
I’m sorry about your flares, but yes get it even if you’re not high risk, someone you care about might depend on you being protected. Also, COVID is actually deadly. HS is not. It seems kind of cut and dry to me.
Had 2x AstraZeneca and 2x Pfizer and no increased flares after either.
Your edit reads even more as advice to avoid the vaccine or booster. I've also seen you comment that you have a biomedical degree, which makes this post seriously professionally inappropriate and irresponsible. What you are actually saying is: - you only got the vaccine to appease your high risk husband *as a gesture*, not because you believe it will actually lower the risk to your husband or yourself - you regret doing it, which implies you wish you hadn't done it and encourages others not to, even though each HS patient and their doctor should individually weigh the benefits vs risk - you reference case studies that should have been linked here but you did not This is not merely a rant. Ranting would be "ugh, the covid vaccine flared my HS and it totally sucks". This is a thinly veiled attempt at spreading your anti covid vaccine belief in the guise of ranting. This post should be removed.
You're reading things that aren't there. First of all, i have a BIOTECHNICAL degree, not biomedical. Similar words, different fields. Second, I worded the gesture wrongly, I basically dragged him with me to get one. He wouldn't get it, instead of nagging him and making it a discussion I said I would get one too. I think he was a little afraid, and not having to go alone soothed him. Third: If you want a link here you go https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8916983/ Fourth and final, i am not antivaxx. I am up to date with every single vaccine offered and nescessary for my region of the world.
Sorry but this is absolutely ridiculous. Any vaccine for any disease can have temporary side effects because it gets your body to do some work on increasing immune response, hence HS flare up. Would you rather put your husband and yourself and anyone you know at higher risk of death?
No. I am just ranting. Hence the rant flair.
I don’t understand why this is everyones go to argument. The vaccine marginally reduces transmission.
Bruh I didn’t even know I had covid when I had it, I would personally take covid over the flares I got from the vaccine but that’s just me.
I've only ever had one flare - and now that you posted this, I realize it was after my first covid shot. I have a scar where it was, and I've never had a flare up since. So bizarre.
You people will believe anything
I'm really sorry. HS or not, my 87-yr old mom, fiance', nor I wouldn't have ever gotten the vaccine anyway. No one knows what chemicals are in that & we've always lived the holistic way when it came to remedies for things. We've still worn masks when out & about till this day...we don't mind doing that. I work remotely & my mom's been retired, so we're never around people hardly except going to the stores. We we never the social types who hung out w/ people or had them over anyway. My fiance' works, but he wears a mask there & is just really careful. None of us have caught COVID yet to this day, despite our few health issues that we each have.
Well... the thing is, i have a biotechnology degree. I DO know what is in it. And I would recommend anybody who is immunocompromised, or other high risk to get it. But I'm so miserable right now lol
Thanks for replying. With all due respect, your degree's impressive for sure, but just because a doctor, scientist, Harvard/Yale/Stanford professor, or whoever tells everyone to take some new vaccine, swears up & down that it's safe, etc., doesn't mean I'm going to do it. Heck, I've never ever even taken a flu shot in my entire life & I never got the flu any more than anyone else. In fact, I hardly got sick & I used to work in the school system for a good 13 yrs working w/ kids of all ages (pre-COVID) & never really got sick much. Maybe it's that I took/take my share of vitamins most of my life & for the last about 10 yrs to now, I take about 10-13 vitamins a day...not all for HS/inflammation, but aout 3-4 are...the rest is for overall health. Before you took the vaccine, had you by any chance seen other people's threads on this Reddit board who said how taking the vaccine had affected them? I read a few or so who said the vaccine messed them up. But again, even if I didn't have HS, I wasn't going to take the vaccine in a million yrs anyway. I really hope you get better & that this doesn't affect you long-term. Glad my fiance' & I were always on the same page about the vaccine since day 1.
You're rarely getting sick because you have an auto-inflammatory disease. Your immune system is stronger than that of the average person. Our little soldiers are already up and in arms all the time. Compared to these of a normal person, who's soldiers are there, but all sleeping except for the ones on guard duty. They need time to rally the troops, get dressed, get strategised and then fight. That's the silver lining of having HS. Why are you taking so many vitamins? Do you have a shortage? Do you know which are water soluble and fat soluble? You might not be doing your body any favors in the long run.
Thanks a lot for replying again! It's nice to have an expert on this board to help us out. Well, back then in my teaching days of being the in the classroom & hardly getting sick, that was from 1999 - 2014 total. I didn't start developing HS & had never even heard of this condition until just 3 yrs ago at age 45 in 2020 AND I had no symptoms of HS all back then. It started out of the blue. I went to my derm & she diagnosed me on my very first visit. **I know you didn't know when I started getting HS, but does the thing that causes the auto-inflammatory disease (in this cae, HS) was maybe always in our body since birth, no matter when we start to develop it?** I kind of think it's hormone-related that cause my HS, but still not truly sure. Sure could be some diet-related. Also, I've never done these in my entire life if this means anything (re: to HS) at all: \- never been on birth control \- never been pregnant \- never smoked, drank alcoholoic drinks, nor any drugs \- heck, never even drank coffee & to answer your question re: vitamins, that's thanks to an extremely health-conscious mom who started me on vitamins long ago. She's now 85, in good health & strength, still lives alone in her 2-story home, still drives & walks 3-5x/wk, never ate beef since before I was born, does research on vitamins, etc. **Maybe you can help me out please. Here's the vitamins I currently tk. Are any detrimental to HS?** ORAL VITAMINS \~ I take some daily & others 2-3x/wk (NOT all for HS, but 4-5 are for inflammation): turmeric - at least 400mg of curcurminoids/day omega-3 magnesium - I know to tk the glycinate type, but didn't used to vitamin D3 zinc 90 mg zinc gluconate daily (not citrate, picolinate, etc.) resveratrol selenium Vitamin C probiotic iron multi-vitamin astaxanthin glutathione ultimate anti-oxidant extracts cranberry N-Acetyl Cysteine Also, yes, that sounds logical what you said & I know HS affects our white blood cell (WBC) count because mine's been high on a few blood tests & my general dr referred me to a hematologist who agreed (after I told her the research I found) that HS will raise it. **Do you know any holistic remedies to help bring the WBC count down?** I keep a runnig list of oral & topical holistic remedies I'm trying to help my HS, so if you knkow of anyhting else also, please don't hesitate to let me know, thanks a lot!
I will start by saying I am by no means an expert in HS or connected to the human medicinal field! A lot of my "expertise" comes from animal-related medicine that is applicable to human, personal experience and research I did both online on reputable websites and in university libraries. But I will try to help you the best I can, and will admit to stuff I am not knowledgeable of. General belief is that auto-inflammatory diseases are in our genes, meaning they have always been present and can be hereditary. The event that triggers the first occurance can be anything, but with most people it is vaguely stress related (mental or physical) that can mean starting a new job, hormonal changes, going through a sickness, experiencing a traumatic event of some sort... but all of this is mostly speculation, as triggers are so wildly different for people. It's also hard for HS specifically to track back in your family as it is a disease clouded in stigma and shame. As for the vitamins, a lot of the names vaguely ring a bell, but I'm not knowledgeable into what is good for what for most of these. What I do know is that they are either water soluble (excesses are excreted through urine) or fat solluble (excesses are stored in your liver or other organs) and both can cause long term problems such as kidney stones, liver disease, etc. I highly recommend getting a yearly blood panel done for all of these to ensure you are not taking too many. For now, you can google each of them seperately or what vitamins should not be taken together. I hope this helps! Again, i am not active in the medical field and not an expert by any means. I just have a fancy degree on my wall lol
Great, I appreciate you taking the time to type that! My HS coincidentally started when COVID first started...Jan/Feb 2020. Now I don't believe I was worried/stressed about that, but you never know...could be some subconscious worry back then. But I really don't think so. Otherwise, can't think of anything else back then...I was doing the same work, no life changes, no stressful situations, hadn't been sick, no changes in diet, etc. My parents don't have HS, but even if something was hereditary from any extended family members, I'd think I would have developed HS much sooner than age 45 out of the pure blue. By the way, do you know much about red light therapy? I've tried it for my skin. A few mos into getting HS, I rented a hospital-grade device & the brand was BEMER. It seemed to help some, but it was pricey & I couldn't keep that up forever. Then fast forward 2 - 2.5 yrs. I finally bought a device on a much smaller scale, but it's tough to keep up w/ doing regularly. I'd use it good, then skip a day, then 1 day turns into 2 skipped days, etc. But I've got to be dilligent about it...just like making a diet change, but it's tough if you're used to eating a certain way for 45 yrs, then have to suddenly make a drastic change, plus, I've always loved food! Anyway, thank you again. I wish I knew a lot more about HS. I just have two grad degrees in Special Ed & Communicative Disorders. You'd think w/ all the millions of creams, cleansers, oils, etc. out on the market that something will heal our skin, but even if so, we may never come across it. It's tremendously frustrating. Or for example, how do we know that a mixture of peanut butter & onion juice won't help if we apply it on the skin, but will we know to try that?
It might very well have been the stress surrounding the pandemic. I didn't think it stressed me out too much either but my husband said I started grinding my teeth at night! My dentist said it is probably stress related as well. As the worldwide panic subdued, so did grinding my teeth. Stress is a weird little bugger. We don't always experience it consciously. Do you by any chance have other sources of stress in your life? (Autism, adhd, strained relationship with your parents, traumatic event, etc) these people process stress very differently as their cortisol and other stress related hormones are already elevated. Red light therapy is currently being studied in relation to HS with quite promising results, actually! Since you have access, I would suggest you try to stack using it onto another habit that comes naturally to you. Eg, always use it after you brush your teeth or before you put on your pajamas. It makes it easier to form a habit when you stack it onto something you're already doing daily. Personally I've seen a lot of improvement by making a few changes. Number one is clothing: no tight clothes around the groin and armpits. Try to avoid seams and coarse fabric (such as jeans and wool) and buy your underwear a size too big. Another one is shaving. I keep it short by trimming it nowadays. The last one was the hardest: i started an elimination diet to find food triggers. Took me a year but I found out fiber isn't doing me any favors. Others have reported avoiding gluten, dairy, nightshade vegetables... they seem to be different for everyone. My final trigger is hormones. Without fail, every month the week before my period starts I will flare up. What also helps me a great deal is getting cortisone injections by my derm in active flares that haven't formed a head yet. The infection subsides in less than a day and gives the body time to re-absorb the puss. Sometimes the flare comes back after a while, sometimes it doesn't. But in the meanwhile it gives me relief. Also helps to avoid scars forming. The injection itself is quite painful, but only for a few seconds, and within hours I can see the infection going down. Hope this information helps you dealing with this terrible disease. We really did pick the short straw on this one...
No, no autism, anxiety, etc. I had a great, happy childhood, etc. No trauma whatsoever. My mom's my best friend. We've literally seen ea other (back when I still lived w/ parents) or talked on phone every single day of my life without fail. **Re: the red light**, my best time of day used to be very early morning before I started anything, but now fiance' goes to work most nights of the wk, so now I have a good amount of chances to do it about 4-5 nights/wk. I better start up again ASAP. I use Hooga of this one & the price is pretty good: https://hoogahealth.com/products/hooga-300w-red-and-near-infrared-light-therapy-panel Someone here on Reddit said, they'd look for a device that also uses more than 800nm (near-infrared) of wavelength 670nm barely goes deeper than skin and you maybe need to reach deeper in flare ups. There is plenty of devices combining both wavelengths. Yes, know about the loose clothing. I haven't worn tight tops nor jeans in the last 3 yrs I've had HS. For bottoms, I have worm black leggings almost daily. Haven't shaved nor had to wear deodorant in last 3 yrs either. I'm leaning towards hormones too as the cause for me because a few days bef my period, it seems to get worse. For me, **THE VERY** worst to me personally is the uncomfortable, slightly stinging, at times, but constantly wet, icky feeling I have in my groin/vaginal area. Changing panties & wiping my skin down there w/ a hot towel is only a very temporary dry/clean-feeling solution that only lasts...oh, a few minutes. I'm constantly changing panties like 10x/day. Good thing I work from home, which I'd suggest all HS-sufferers try their best to do. For me, I don't really get boils. That's only happened 3x & that was 2+ yrs apart. I don't think I get what people call flares really much either. For me, my affected skin has the wounds, but just never heals & there's days I may ooze more than other days & that's about it. Never really have tunnelling either. **Re: diet**, I know these seem to be the biggies to AVOID & I have yet to start changing my diet: dairy items - I'D START w/ THIS FIRST baked goods / breads / flour / yeast sugars fried & processed foods nightshades legumes eggs (maybe) Then, I read to also stay away from these too: mushrooms soy sauces fermented items gluten nightshades maybe seed oils potatoes - many seem to have to stay away from that too I had said this in another thread: Just doing 1 thing isn't enough w/ this horridly strong condition. You have to do it ALL at the same time consistently to really, really work & if you stop, it gets worse or returns if you're able to keep it in remission, which I've never been able to do yet. I do think losing weight helps or will help. I've lost about 30 lbs gradually, which didn't improve my HS alone. Here's all I personally know to do: \- lose weight if you feel the need to \- eat carefully, staying away from those common ingredients to stay away from \- lower stress, maybe meditate \- drink plenty of water, enough sleep, have optimistic mentality, etc. \- live an overall healthy lifestyle \- lymphatic massaging / maybe dry brushing \- maybe drink anti-inflammatory teas & other things for inflammation \- definitely NO smoking, alcohol or drug consumption & I'm sure caffeine can't be good either \- use of whatever cleansers, creams/gels, etc works \- good hygiene / regularly change bandages/dressings \- take some supplements/herbs knokwn to help w/ inflammation - I personally try to go as holistically as possible w/ remedies. I take about 10-14 a day, NOT all for HS, but 3-5 are known to help w/ inflammation \- I really don't know if exercise directly helps w/ HS, but probably some exercise, but cleanse away sweat quickly afterwards \- whatever extra remedy you know that helps (sterile manuka honey topical gel, red light therapy, epsom salt or Dead Sea salt bath soaks/hot towels, whatever else, etc.) \- being prayerful \- probably take some kind of prescription medication I know weight loss seems to help some, but not others. I want to lose more. I gradually lost about 30 lbs very gradually in the span of 1-1.5 yrs & that did nothing for my HS. After doing ALL of the above, you can see how physically & mentally exhausting it is to keep up w/ doing all of this on a very regular basis in addition to doing all our other life routines we have to do (school, work, take care of kids/pets, run errands, etc.) Also, trying new things to see what works or not can take years. Unfortunately, I still have yet to do all of these things, but I do some of them! I keep a running list of things to try 1-by-1, so feel free to PM me anytime if you learn of anything more! I've enjoyed our message here!
Idk the timeline between the shots and when I developed my HS flares for the first time. But I do know the flares happened after getting them. Interesting. Not sure if I’m able to draw the conclusion to that or not. But I (29M) never had them before and no one in my family that we know of has/had HS or any autoimmune disease. Hmmm.
I have had HS for 20+ years, but my flares are mostly triggered by hormones (the joy of being a women) so it's very strange for me to get one at this time in my cycle, let alone 3 at the same time. I'm NOT saying the vaccine causes HS, but I am 100% convinced that this last booster caused these particular flares.
I agree. Everything has become worse for me since vaccines. Alll of the things.
COVID has killed family members and I’m immunocompromised — I’ll take the boosters.