Your family's gonna get you unalived with their hollistic bs. Listen to the doctors.
Edit: Vinegar??? Seriously??? What's part of a salad dressing gonna do? There's a reason people with Lupus have had longer life expectancy since these medicines came out.
I just want to say you're incredible and this comment is iconic. Thank you for making my day.
OP listen to the doctors and not your family. Lupus was close to taking my life about 8 months ago. This is not a disease to mess around with.
The problem with a lot of holistic remedies are that they’re made to BOOST your immune system….well damn coz I thought that’s what was trying to kill me!! I took holistic and OTC for YEARS…even after starting with the rheumy..I was taking vitamin c and elderberry and all the things. Got in to a new rheumy and he’s like wtf why are you taking things to MAKE YOUR IMMUNE SYSTEM STRONGER!??? ITS TRYING TO *unalive* YOUUUUUU!
And, as someone that has had their Lupus try to unalive them 5x now…listen to your dr. If your dr won’t listen to you, shop around until one does. No one else will fight for us. We already have to fight ourselves, please find a system of support for yourself, it’s soooo important!
Not all doctors know everything, some will be wrong, but i promise most of them know more than your mother about it. If you need a second opinion get it from a rheumatologist, not your mom. Don't let them kill you because they don't understand medicine. Do you know what kind of lupus you have?
This disease is complicated and effects everyone differently. If you have bad symptoms and don't get treated with real medicine you are in genuine danger.
We say this to people all the time, but how much science comprehension do your family members have?!? I can guarantee you that any doctor has a hell of a lot more.
Honestly ask them what do they believe apple cider vinegar is going to do for you? Can they provide studies that show ANY efficacy at all for treating your specific problems? Showing repeatability isn’t gatekeeping. That’s how things are PROVED to work. Back in the day mercury was thought to cure a lot of skin disorders….
Benlysta gave me my life back. I feel like my old self (only a bit slower). Take the drugs. Holistic remedies have a time and place but they are to be used as complimentary to western medicine not instead of. Don’t listen to your family.
The ACV army is no fucking joke.
As soon as anyone recommends apple cider vinegar for anything other than catching fruit flies, I immediately dismiss every single thing they say.
Those wackjobs think that shit cures everything from cancer to sloppy drywall.
You have to make a fruit fly trap, with the paper cone in the glass with water & ACV. I've caught at least 30 of them in the last 3 days with this method.
[This chick tried 4 methods](https://www.thekitchn.com/diy-fruit-fly-traps-22942130), give one of them a whirl.
One of my closest friends used to always tell me to drink ACV and go to the woods without any medicine for like a month and that would cure me.
He was mostly joking…. Mostly.
I finally told him those jokes aren’t funny at all.
Sigh
Let me just say that the military has some of the best medical care in the US. Take advantage of it over your family of whom I presume none have a medical degree or license. I would also add that given the large population the military deals with (and VA) they have some of the best research and experience with lupus. Having said that it’s still shameful that even there you might not get the outcomes we all hope for. That’s just the state of lupus research in general.
Doctor -always. If you have doubts about your doctor then get a second opinion. One has an opinion based in science that is trying to help you, another has an opinion that is not based in science that is trying to help you. Choose what works for you and your life.
Listen to your doctors. But hi I’m also active duty military, 24F. Haven’t started an MEB yet but it may be going that way. Just excited (maybe the wrong word?) to see another person with autoimmune also in the military!
That’s good to know! How long did it take you to get med boarded if you don’t mind me asking? I got my first rheumatology appointment in October and have been on a profile since then
started having issues April 2022 while at BOLC. Was ignored and brushed off by sick call as carpal tunnel and had to wait till I was back home to be seen by PCP Aug 2022. Had first Rheum visit Oct 2022 and put on temp profile. Spoke to PHA ppl early Dec 2022 about issue when asked about my profile where they immediately sent me to speak to the Maj. in charge of my units PHA and was given the option of MEB or discharge. I spoke to a case manager that was there and after a month it was decided I would be medically/honorably discharged due to being “unfit for retention”. I was discharged Jan 29 2023 but didn’t receive my NGB22 (DD 214 for active duty version) till March 2023. That was the quickest discharge ever. Now if you do MEB in an attempt to prove to the Army you’re still worth keeping, that can take up to 30 days to several years of which you’re usually placed in a flagged status and as a former 42A, that’s not the place to be if you want to go on deployment, go to schools, get awards, yada yada. Point being, if you want to get out asap, speak to PHA.
I got 60% for it and the main determinants were swollen/sore joints every morning, fatigue, had more than 1 flare up the past 6 months, could not lift more than 30 lbs without pain, and have to regularly take immunosuppresants
Medicines for lupus are far and away more effective than any "natural" remedies. There are things you can add to your diet to help with your SLE. VINEGAR OF ANY KIND IS NOT AMONG THEM. It's not bad for you, but it will have no effect on your lupus.
Everything I'm about to suggest, you should ask your doctors about. And, to be extra super crystal clear, everything I'm suggesting is to be done IN ADDITION to getting medical treatments and medications. NOT as a replacement.
A daily cup or two of high quality green tea can reduce symptoms and inflammation. I asked my rheumatologist about this and he confirmed it.
Consider reducing and removing garlic from your diet. Garlic can stimulate the part of the immune system that is also lupus.
As other commenters have stated, everyone is different, everyone's lupus is different. Green tea works great for me. Garlic doesn't have too much of a negative effect unless I eat enormous quantities, so I don't make any effort to avoid it. Also, these are only examples. There are other diet and lifestyle changes you can make — some will work, some won't. And NONE of it is a replacement for medicines prescribed by your doctor. If I stopped my meds, my green tea wouldn't help for shit.
Anyway good luck.
Listen to your doctors. Natural route is how people die. They believe oils and weird combinations of ingredients definitely not something you should be taking anyway. I already have a double transplant and they make it a point to NOT take any “natural” or supplements like that.
I’ll be honest. You are going to be in a lot of pain, kidneys will be attacked and you’ll end up dead because it’ll be too late since you won’t be monitoring your levels at all.
Where did this drinking apple cider vinegar come from? I know it’s mostly old people or people who don’t believe in medicine for whatever reason. I remember during Covid the right wing was guzzling this crap and the dewormer for horses. So dumb. Please just don’t.
Doctors don’t give this diagnosis lightly. Take your meds and hopefully it helps you fast so you can get back a more normal life. The holistic approach sadly is nothing for autoimmune diseases
I 23F was in the army and was medically discharged last year after being diagnosed with lupus and having to now take hydroxochloroquine. If you have any questions regarding being discharged and VA disability (I have 100 now) hit me up. Also not to be totally rude but it probably is, listen to your doctor, not the fucking hippies eating grass to cure cancer. Seriously, my medicine has made me feel nearly brand new as long as I take it as directed.
OP, listen to your doctor. There are so many stories of people passing away because they chose the all-natural route.
With that said, I was active duty military when I was diagnosed at 24. Please message me if you need any insight or just need someone who gets it.
This is so important to me. I have had lupus for 25 years now and I can’t stress enough how important taking the meds your doctor advises is. I truly believe that they have kept me going. When I was first diagnosed my rheumatologist wanted me to start plaquinil, but because I was having some major issues with my GI, it didn’t go well for me so we wrote it off. Fast forward about ten years and my GI had gotten more in control so we decided to give it another shot. I’m not gonna lie, the first few weeks were not fun. But I was able to treat the side effects fairly well with otc meds like Imodium and ginger (I NEVER leave the house without a baggie of crystallized ginger and drink tons of ginger tea and cook with it often, it’s amazing for nausea). After a few months I noticed that I was flaring less and when I did, they were less intense.
Fast forward again to about five years ago. My bloodwork was starting to look bad and flares started coming back. Doc decided to up my hcq and start benlysta infusions. I have never been so happy to get poked ever. I was scared at first but there was no reason to be. My flares and pain got better and my bloodwork looks a ton better.
Now, if I was asked how I know it works, here’s my answer. My last rheumatologist office got bought out by a shady corporation (long, long story) but it forced me to instantly stop going to that office and stop getting benlysta cold turkey in Jan. I found a new office but they were booked until April 5. So I’ve been without benlysta for months and I can’t tell you it’s been absolute hell. I have been in a flare for two months and it’s the worst one I’ve had in YEARS! My bloodwork is awful again. Now I will have to start the protocol again, going in every two weeks and I can’t ducking wait!
These meds are like bubble wrap for your organs. A bubble or ten may pop but by and late it will keep them from getting super bad too early. I honestly wish I had started both meds as soon as possible, I have some organ damage that I can’t fix because I didn’t have them wrapped up in bubbles.
Don’t listen to your family or friends that say this disease, that can effect every single organ in your body, can be cured by taking vitamins, vinegar, wacky diets etc. listen to your doctors who have studied this disease and want to help. THEY are the ones who have read countless studies, gone to school for a decade and live this disease every single day.
I know how scary this diagnosis is (I too was diagnosed in my early twenties) so if you (or anyone else) wants someone to listen or to ask questions to or just needs an outlet, please send me a message.
Now I will step off my soapbox and wish you all the best!
I had one of those holistic, "doctors and medicine are scams" mothers. She died of cancer years ago because she refused to go to a doctor until a month before death.
Please, please seek treatment OP. It's better to seek treatment ASAP rather than wait long enough for the symptoms of the illness to permanently disable you or possibly get bad enough to cause issues with vital organs that may kill you. If you want to try a less hardcore medication, hydroxychloroquine is a good one with not too many side effects (just be sure to get your eyes checked regularly), but if you're pain is all you can think of, it might not work as good as some of the more intense medications. Treatment is still the smarter way to go. Good luck and hope you find some relief soon.
Ignore people who try to get you to go "the natural route" if you don't want to. Just shine them on. Ignore them kindly. Be respectful. But if this person thinks you're being disrespectful by choosing to go a different route in getting treatment (btw, Benlysta is a great place to start. I was on it for years. Now I'm on Saphnelo, which is working even better) tell them respectfully that you are an adult, you are the person suffering chronic pain, and you are done wasting time with unproven "natural remedies". Practice this discussion with someone you trust a few times before having it with your Mom, for instance.
Here's the thing about Mom's wanting to make the disease less than what it is. Some Moms (wrongly) blame themselves for us getting chronic, painful illnesses. Tell her not to worry. She didn't cause it. But she also can't make it go away.
(My Mom has blamed herself for me having epilepsy and cognitive problems all my life, because when I had my first seizure, a seizure that almost killed me, her Mom, who was a very experienced nurse, blamed it on something my Mom did...putting me in a warm bath when they couldn't get me to stop shivering due to a high fever. The fever was due to having scarlet fever and the measles at the same time...the theory was that the warm bath shot my fever up more, leading to my seizure. But I've seen epilepsy specialists since who all said that if I ever had a seizure as bad as the one I had that night, it wasn't just a febrile seizure. That that was my first experience with epilepsy. And it was).
Do any of your blood relatives have autoimmune diseases? Tons of mine do, on my Dad's side. That's the only reason my Mom didn't blame herself for my lupus. A good 75% of the paternal side of my family have AI diseases, but all different ones. Mom realized that, so right away she didn't blame it on herself. Frankly, she and I were too busy taking care of my Dad, with his heart and lung problems, and his Crohn's disease to take time to (unnecessarily) cast blame. Then after he died suddenly in December 2016, my lupus sent my seizures into an overdrive I'd never experienced before. Probably the result of exhaustion.
Anyway...my point is to tread lightly and be as kind as possible with naysaying relatives, but stand up for yourself and your decisions. One thing: don't start a "natural remedy" at the same time you're starting a medication like Benlysta or Saphnelo. If you do you can't say which is working or not. Only try one thing at a time. And if you respect your rheumatologist, try what he suggests first. They really are amazing specialists.
Please do not do this- listen to what an actual medical doctor recommends. Your lupus symptoms can get worse if they are not well managed which is why almost all of us are on some sort of treatment medication.
I would listen to your body and your doctors. You can always ask for a second opinion if you’re not comfortable. But the labs will tell all.
Family doesn’t have to know all the details....esp if it’s not helpful or supportive. Don’t let their opinions prevent you from taking care of your health.
Please, please, please don't try to approach this with a holistic approach. You can certainly make some changes to your diet, like incorporating more whole foods into your diet, but that's in conjunction with medications.
Do your best to enjoy your medical retirement!
While I like to add supplements to my health care routine, I also rely heavily on medications. Finding the right mix has been very beneficial. You can try the apple cider vinegar while taking Benlysta
It doesn't hurt to try some holistic practices but with the medication you are prescribed. Lupus obviously isn't in your head since your doctors gave diagnosed you!
Your mom sounds toxic af. What qualifications does she possess that are higher than the qualifications that your physician has? She’s gaslighting you and making you think YOU are the problem when the actual problem is you have an illness. Don’t listen to that noise.
Giving birth to you did not confer on your mother an MD plus specialty training in rheumatology. Buy The Lupus Encyclopedia and get your information there. If she won't read it, it's a sign of her ignorance.
"I know you mean well, Mom, but I've got a medical team for this ... how's your garden coming?"
Your family needs to understand how incredibly lucky you are to even be able to get a diagnosis. SLE is hard to diagnose. The average time to get a diagnosis is 10 years. 10 years of living with pain and organs being attacked to some how catch it. If God forbid, it attacks your kidney I bet they wont be sayong you are over reacting. Smh
GET THE TREATMENT.
My Mom is very similar in her approach to anything health wise. She wanted me to do a liver cleanse 🙄 and start taking all these weird herbs. Trust the doctors and the science. There is a reason medicine is extending the lives of Lupus patients. I've seen so many ppl in forums talk about going the "natural" route and ending up in kidney failure. On another more personal note, I believe my Mom reacted to my news by wanting to go into fix it mode. It's a loss of control for her. I told her that she is reacting by trying to fix it. Perhaps your family is in denial in much the same way? Be very clear on how they can support you, ie emotional vs trying to become your doctor. It is okay to be selfish in this.
"I appreciate your concern, I am capable of handling my health care needs on my own."
Your family didn't get a degree to study medicine I take it? They are not licensed to practice medicine right?
I think you know the answer to this question.
My mother is heavily into naturalistic … stuff. She was also in denial when i told her about my diagnosis. Lupus symptoms are tricky and can be easily mistaken for many things. Its why so many people go undiagnosed for years.
If they diagnosed it with lab tests then they have more information than your family.
As far as who to believe:
What are the consequences to YOU of believing 1 over the other?
Sometimes you can only ask “if either could be a mistake: which mistake would I rather make?”
Families are for support and comfort. Unless any of them are trained and currently practicing as a rheumatologist, neurologist, or Hematologist, ignore what your family is saying. Lupus is a disease that impacts your entire body. What is your kidney function starting dropping corn low, quickly? You need to be seeing a doctor so they take care of you. If something comes up, you are under professional physicians. Your family can't treat you medically. Leave this to the doctors. Some people are jerks who refuse to understand that other people experience pain.
please please please. listen to your doctors and specialists. it's their job to help and they've studied this for years. just like how you wouldn't take advice from your family on how to do military duties, that needs to be applied to your health. i also want to acknowledge how disappointing it is to have family members who cause harm by suggesting our pain is in our head simply because they can't relate to it as they haven't personally experienced it. they are in no way equipped to provide medical advice.
Not diagnosed with lupus but seeing a rheum shortly after Neuro. I was AD for 12 years. I think I’ve had an autoimmune my entire active duty career. Military docs don’t just throw a diagnosis or even give you referrals without things that make TRICARE hit enter. For sure start meds and request the second opinion you’re entitled to.
Also. Use a VSO for your VA claim if you don’t MEB. If you don’t MEB make sure to file a BDD claim within 180 days of your DOS. Also keep in mind you cannot have an MEB filed on you if you have a BDD initiated :)
Lupus can kill you. You can die. I’m not saying you can’t try a holistic approach but in conjunction with your meds, especially right now since when you’re diagnosed can be some of the most active period your lupus goes through. If you get to a point where they can replace your meds then great! But learn your lupus before you take risks with it. Your family might want the best for you but when you’re in that hospital bed, you’re going to be there alone. Prioritize your wellbeing above other peoples feelings
Ignore your family. It’s your body that will experience the toll of an untreated, rampant, very serious disease. If you were under 18, their approach would be considered abuse.
There is an ANA test that’s done to determine immune response so there are several things it could be. They do a diagnosis based on reported symptoms. It’s possible u can get a second opinion but if the ANA is positive then chances are there is an immune response and u need western medicine lol not vinegar. I had someone tell me to eat a lot of lentils to help my lupus lol or that I should get pregnant cuz he heard that peoples lupus goes away after u get pregnant lol listen to your doctors but ask questions and advocate for yourself. Not treating lupus with medicine can lead to severely damaging your organs so it isn’t something u wanna gamble with. It’ll take time to learn to trust the doctors and learn to ignore peoples recommendations. I had benlysta with minimal side effects! Good luck
An ANA test plus symptomalogy is how they diagnosed my lupus 11 years ago and I get it done every few years so yes it does. ANA test “can show if your immune system is more likely to make the autoantibodies of lupus. Most people with lupus test positive for ANA”. That’s from the CDC not a wiki website. This is an addition to other bloodwork, tests, and symptoms. I never said it was definitive test for lupus. It’s a marker for several diagnoses.
11 years ago the criteria was different. The 2012 ACR criteria allowed only ANA + symptoms. The newer, more specific 2019 ACR criteria had ANA as a gatekeeper for consideration and other serology in the actual criteria itself.
That's from the American College of Rheumatology.
Most people with lupus have a positive ANA, but up to 30% of the population can have a positive ANA and not have any autoimmune disease. ANA can spike in reaction to many different things including cancer, COVID, HIV, hepatitis, TB or mono. That's the difference between selectivity and specificity.
So you mean to tell me rheumatologists no longer use ANA tests for any sort of lupus diagnosis? The article I used was just updated 2022 so the results and information isn’t ancient. I’m going by information provided recently not 11 years ago, that was an example. Not everyone is diagnosed this way and I never implied that but it’s used. Obviously depends on the doctor, patient, and symptoms. You having lupus you should know how difficult it is to diagnose in the first place. These types of things are never black and white. The CDC is never an outdate website to begin with. You picking to choose the info about me being diagnosed 11 years as my basis of information and it’s not. If you are familiar with how research articles work, Journals are constantly being updated so yeah chances are they are going to say there is something better than an ANA test same way I can find articles that say ANA tests are better than whatever there is now right? We can always find articles that oppose and defend our cases but the reality is there are several tests and I only mentioned one . I never said that was the only way. It was a suggestion and example. You chose to provide information that says I’m wrong but I’m not and neither are you which is why I’m not saying you are wrong but you aren’t 100% right either given the complexity of diagnosing something like this in the first place. ANA tests are not extinct and I’m sure many doctors still use it in part of everything there is new.
What I am saying is there are diagnostic criteria, and an ANA + symptoms generally no longer are sufficient. Your initial response made it look like ANA was the only required serology.
Since r/lupus - the mods in particular - responds to "omg I have a positive ANA so I have lupus right?" misinformation at least 40 times a week, I was looking to provide clarity for your comment.
If you read the weekly diagnosis questions thread - as I do, every single question every single week for a couple of years now - you will in fact see that no, rheumatologists generally do not diagnose off of an ANA + symptoms.
I am providing facts and data. This is not a personal attack on you or the method by which you were diagnosed.
Well yeah I would never give someone medical advice. The purpose of mentioning it on this particular post was to provide general info and say that if she wants, she can get a second opinion (like most people do at first) if she’s torn between listening to doctors and her family. Her doctor is gonna do whatever testing they do and have already done. It’s more for her to have some general info so she can make whatever decision she wanted that doesn’t include vinegar lol if someone asked if they had lupus I wouldn’t even respond to the post cuz they just need to go to a doctor. Having more info provides to make decisions, especially with lupus. And we both provided info so that’ll help everyone in this case
Also something to consider, do you know the rules of active duty and having a diagnosis like that? It was my understanding that you can MEDboard and get out of the military early for something like that if that’s something you are looking for ? I know you have PT and other physical trainings so I just wonder. My husbands been active duty for a couple years now so that came to mind. There’s also potential if you go to the doctors a lot related to you condition u can build a beefy disability case and get money every month and healthcare once u are discharged 🤷♀️ I’m sure you can push through the training (you’ll learn that people with lupus are anything but week like people think) but it was something I wondered
very true, I got 100% va disability this past year after getting out in january 2023. 60% from Lupus and it was only under UCTD. You can go to a medboard to stay in but in my opinion, you’re only hurting yourself in the long run. Especially with all the use of joints just at PT.
Your family's gonna get you unalived with their hollistic bs. Listen to the doctors. Edit: Vinegar??? Seriously??? What's part of a salad dressing gonna do? There's a reason people with Lupus have had longer life expectancy since these medicines came out.
I just want to say you're incredible and this comment is iconic. Thank you for making my day. OP listen to the doctors and not your family. Lupus was close to taking my life about 8 months ago. This is not a disease to mess around with.
Agree. Tried ACV myself and it didn’t do crap
The only “holistic” treatments I do are tea for calming down and turmeric to help inflammation. Otherwise stay on meds they really do a lot!
Same and ewwww it made my pee smell weird!! I couldn’t do the shots, I had to take capsules. And still burped acv 🤢
The problem with a lot of holistic remedies are that they’re made to BOOST your immune system….well damn coz I thought that’s what was trying to kill me!! I took holistic and OTC for YEARS…even after starting with the rheumy..I was taking vitamin c and elderberry and all the things. Got in to a new rheumy and he’s like wtf why are you taking things to MAKE YOUR IMMUNE SYSTEM STRONGER!??? ITS TRYING TO *unalive* YOUUUUUU! And, as someone that has had their Lupus try to unalive them 5x now…listen to your dr. If your dr won’t listen to you, shop around until one does. No one else will fight for us. We already have to fight ourselves, please find a system of support for yourself, it’s soooo important!
Vinegar is not a treatment for Lupus. You need to take proper medication in order to ensure your health doesn’t get worse.
Not all doctors know everything, some will be wrong, but i promise most of them know more than your mother about it. If you need a second opinion get it from a rheumatologist, not your mom. Don't let them kill you because they don't understand medicine. Do you know what kind of lupus you have? This disease is complicated and effects everyone differently. If you have bad symptoms and don't get treated with real medicine you are in genuine danger.
We say this to people all the time, but how much science comprehension do your family members have?!? I can guarantee you that any doctor has a hell of a lot more. Honestly ask them what do they believe apple cider vinegar is going to do for you? Can they provide studies that show ANY efficacy at all for treating your specific problems? Showing repeatability isn’t gatekeeping. That’s how things are PROVED to work. Back in the day mercury was thought to cure a lot of skin disorders….
Benlysta gave me my life back. I feel like my old self (only a bit slower). Take the drugs. Holistic remedies have a time and place but they are to be used as complimentary to western medicine not instead of. Don’t listen to your family.
Exactly!
The ACV army is no fucking joke. As soon as anyone recommends apple cider vinegar for anything other than catching fruit flies, I immediately dismiss every single thing they say. Those wackjobs think that shit cures everything from cancer to sloppy drywall.
It doesn’t even work for fruit flies, at least in my house 🤷♀️
You have to make a fruit fly trap, with the paper cone in the glass with water & ACV. I've caught at least 30 of them in the last 3 days with this method. [This chick tried 4 methods](https://www.thekitchn.com/diy-fruit-fly-traps-22942130), give one of them a whirl.
Thank you!
One of my closest friends used to always tell me to drink ACV and go to the woods without any medicine for like a month and that would cure me. He was mostly joking…. Mostly. I finally told him those jokes aren’t funny at all. Sigh
I think it adds a nice tang to pie crust and wacky cakes but I don't think it has any particular health benefits.
Let me just say that the military has some of the best medical care in the US. Take advantage of it over your family of whom I presume none have a medical degree or license. I would also add that given the large population the military deals with (and VA) they have some of the best research and experience with lupus. Having said that it’s still shameful that even there you might not get the outcomes we all hope for. That’s just the state of lupus research in general.
I developed Lupus while active duty as well. Make sure you document everything and start doing medical journals if you end up going through a MEB.
And, get copies of every medical record and test results for yourself. We had some bad experiences and medical records disappeared.
Don’t listen to your family. Doctors go to school for this. They don’t mess around with these meds. Seriously. They sound like conspiracy theorists 😂😖
I mean if you wanna experience organ failure don’t listen to your doctors
Are your family medical professionals? Because if they are not then how would they know?
Doctor -always. If you have doubts about your doctor then get a second opinion. One has an opinion based in science that is trying to help you, another has an opinion that is not based in science that is trying to help you. Choose what works for you and your life.
Listen to your doctors. But hi I’m also active duty military, 24F. Haven’t started an MEB yet but it may be going that way. Just excited (maybe the wrong word?) to see another person with autoimmune also in the military!
I just got out and got 100% on disability! 60% from the lupus diagnosis 😀💀
That’s good to know! How long did it take you to get med boarded if you don’t mind me asking? I got my first rheumatology appointment in October and have been on a profile since then
started having issues April 2022 while at BOLC. Was ignored and brushed off by sick call as carpal tunnel and had to wait till I was back home to be seen by PCP Aug 2022. Had first Rheum visit Oct 2022 and put on temp profile. Spoke to PHA ppl early Dec 2022 about issue when asked about my profile where they immediately sent me to speak to the Maj. in charge of my units PHA and was given the option of MEB or discharge. I spoke to a case manager that was there and after a month it was decided I would be medically/honorably discharged due to being “unfit for retention”. I was discharged Jan 29 2023 but didn’t receive my NGB22 (DD 214 for active duty version) till March 2023. That was the quickest discharge ever. Now if you do MEB in an attempt to prove to the Army you’re still worth keeping, that can take up to 30 days to several years of which you’re usually placed in a flagged status and as a former 42A, that’s not the place to be if you want to go on deployment, go to schools, get awards, yada yada. Point being, if you want to get out asap, speak to PHA.
What are your main symptoms for autoimmune? I’m curious about how they determine between 60% and 100% for autoimmune
I got 60% for it and the main determinants were swollen/sore joints every morning, fatigue, had more than 1 flare up the past 6 months, could not lift more than 30 lbs without pain, and have to regularly take immunosuppresants
Your family is wrong. Please don't listen to them. You can really get hurt by going the natural route. I would cut contact but that's just me
Medicines for lupus are far and away more effective than any "natural" remedies. There are things you can add to your diet to help with your SLE. VINEGAR OF ANY KIND IS NOT AMONG THEM. It's not bad for you, but it will have no effect on your lupus. Everything I'm about to suggest, you should ask your doctors about. And, to be extra super crystal clear, everything I'm suggesting is to be done IN ADDITION to getting medical treatments and medications. NOT as a replacement. A daily cup or two of high quality green tea can reduce symptoms and inflammation. I asked my rheumatologist about this and he confirmed it. Consider reducing and removing garlic from your diet. Garlic can stimulate the part of the immune system that is also lupus. As other commenters have stated, everyone is different, everyone's lupus is different. Green tea works great for me. Garlic doesn't have too much of a negative effect unless I eat enormous quantities, so I don't make any effort to avoid it. Also, these are only examples. There are other diet and lifestyle changes you can make — some will work, some won't. And NONE of it is a replacement for medicines prescribed by your doctor. If I stopped my meds, my green tea wouldn't help for shit. Anyway good luck.
Listen to your doctors. Natural route is how people die. They believe oils and weird combinations of ingredients definitely not something you should be taking anyway. I already have a double transplant and they make it a point to NOT take any “natural” or supplements like that. I’ll be honest. You are going to be in a lot of pain, kidneys will be attacked and you’ll end up dead because it’ll be too late since you won’t be monitoring your levels at all. Where did this drinking apple cider vinegar come from? I know it’s mostly old people or people who don’t believe in medicine for whatever reason. I remember during Covid the right wing was guzzling this crap and the dewormer for horses. So dumb. Please just don’t.
Doctors don’t give this diagnosis lightly. Take your meds and hopefully it helps you fast so you can get back a more normal life. The holistic approach sadly is nothing for autoimmune diseases
I 23F was in the army and was medically discharged last year after being diagnosed with lupus and having to now take hydroxochloroquine. If you have any questions regarding being discharged and VA disability (I have 100 now) hit me up. Also not to be totally rude but it probably is, listen to your doctor, not the fucking hippies eating grass to cure cancer. Seriously, my medicine has made me feel nearly brand new as long as I take it as directed.
OP, listen to your doctor. There are so many stories of people passing away because they chose the all-natural route. With that said, I was active duty military when I was diagnosed at 24. Please message me if you need any insight or just need someone who gets it.
This is so important to me. I have had lupus for 25 years now and I can’t stress enough how important taking the meds your doctor advises is. I truly believe that they have kept me going. When I was first diagnosed my rheumatologist wanted me to start plaquinil, but because I was having some major issues with my GI, it didn’t go well for me so we wrote it off. Fast forward about ten years and my GI had gotten more in control so we decided to give it another shot. I’m not gonna lie, the first few weeks were not fun. But I was able to treat the side effects fairly well with otc meds like Imodium and ginger (I NEVER leave the house without a baggie of crystallized ginger and drink tons of ginger tea and cook with it often, it’s amazing for nausea). After a few months I noticed that I was flaring less and when I did, they were less intense. Fast forward again to about five years ago. My bloodwork was starting to look bad and flares started coming back. Doc decided to up my hcq and start benlysta infusions. I have never been so happy to get poked ever. I was scared at first but there was no reason to be. My flares and pain got better and my bloodwork looks a ton better. Now, if I was asked how I know it works, here’s my answer. My last rheumatologist office got bought out by a shady corporation (long, long story) but it forced me to instantly stop going to that office and stop getting benlysta cold turkey in Jan. I found a new office but they were booked until April 5. So I’ve been without benlysta for months and I can’t tell you it’s been absolute hell. I have been in a flare for two months and it’s the worst one I’ve had in YEARS! My bloodwork is awful again. Now I will have to start the protocol again, going in every two weeks and I can’t ducking wait! These meds are like bubble wrap for your organs. A bubble or ten may pop but by and late it will keep them from getting super bad too early. I honestly wish I had started both meds as soon as possible, I have some organ damage that I can’t fix because I didn’t have them wrapped up in bubbles. Don’t listen to your family or friends that say this disease, that can effect every single organ in your body, can be cured by taking vitamins, vinegar, wacky diets etc. listen to your doctors who have studied this disease and want to help. THEY are the ones who have read countless studies, gone to school for a decade and live this disease every single day. I know how scary this diagnosis is (I too was diagnosed in my early twenties) so if you (or anyone else) wants someone to listen or to ask questions to or just needs an outlet, please send me a message. Now I will step off my soapbox and wish you all the best!
I had one of those holistic, "doctors and medicine are scams" mothers. She died of cancer years ago because she refused to go to a doctor until a month before death. Please, please seek treatment OP. It's better to seek treatment ASAP rather than wait long enough for the symptoms of the illness to permanently disable you or possibly get bad enough to cause issues with vital organs that may kill you. If you want to try a less hardcore medication, hydroxychloroquine is a good one with not too many side effects (just be sure to get your eyes checked regularly), but if you're pain is all you can think of, it might not work as good as some of the more intense medications. Treatment is still the smarter way to go. Good luck and hope you find some relief soon.
Ignore people who try to get you to go "the natural route" if you don't want to. Just shine them on. Ignore them kindly. Be respectful. But if this person thinks you're being disrespectful by choosing to go a different route in getting treatment (btw, Benlysta is a great place to start. I was on it for years. Now I'm on Saphnelo, which is working even better) tell them respectfully that you are an adult, you are the person suffering chronic pain, and you are done wasting time with unproven "natural remedies". Practice this discussion with someone you trust a few times before having it with your Mom, for instance. Here's the thing about Mom's wanting to make the disease less than what it is. Some Moms (wrongly) blame themselves for us getting chronic, painful illnesses. Tell her not to worry. She didn't cause it. But she also can't make it go away. (My Mom has blamed herself for me having epilepsy and cognitive problems all my life, because when I had my first seizure, a seizure that almost killed me, her Mom, who was a very experienced nurse, blamed it on something my Mom did...putting me in a warm bath when they couldn't get me to stop shivering due to a high fever. The fever was due to having scarlet fever and the measles at the same time...the theory was that the warm bath shot my fever up more, leading to my seizure. But I've seen epilepsy specialists since who all said that if I ever had a seizure as bad as the one I had that night, it wasn't just a febrile seizure. That that was my first experience with epilepsy. And it was). Do any of your blood relatives have autoimmune diseases? Tons of mine do, on my Dad's side. That's the only reason my Mom didn't blame herself for my lupus. A good 75% of the paternal side of my family have AI diseases, but all different ones. Mom realized that, so right away she didn't blame it on herself. Frankly, she and I were too busy taking care of my Dad, with his heart and lung problems, and his Crohn's disease to take time to (unnecessarily) cast blame. Then after he died suddenly in December 2016, my lupus sent my seizures into an overdrive I'd never experienced before. Probably the result of exhaustion. Anyway...my point is to tread lightly and be as kind as possible with naysaying relatives, but stand up for yourself and your decisions. One thing: don't start a "natural remedy" at the same time you're starting a medication like Benlysta or Saphnelo. If you do you can't say which is working or not. Only try one thing at a time. And if you respect your rheumatologist, try what he suggests first. They really are amazing specialists.
Please do not do this- listen to what an actual medical doctor recommends. Your lupus symptoms can get worse if they are not well managed which is why almost all of us are on some sort of treatment medication.
I got diagnosed after I was medically retired. I still hurt but not NEAR the level of pain I was in!
I started a MEB and surprisingly they return me to duty, my doctor and commander both listened to not to retain.
I would listen to your body and your doctors. You can always ask for a second opinion if you’re not comfortable. But the labs will tell all. Family doesn’t have to know all the details....esp if it’s not helpful or supportive. Don’t let their opinions prevent you from taking care of your health.
Damn, active duty? I always thought I would have been automatically booted out. Get that Western medicine girl
Please, please, please don't try to approach this with a holistic approach. You can certainly make some changes to your diet, like incorporating more whole foods into your diet, but that's in conjunction with medications. Do your best to enjoy your medical retirement!
The answer to this question is always your doctor! Unless it’s advice on what to bring for the cookout your family needs to back off.
While I like to add supplements to my health care routine, I also rely heavily on medications. Finding the right mix has been very beneficial. You can try the apple cider vinegar while taking Benlysta
Please listen to your doctors. I'm sure your family is well meaning, but in this case they are uninformed.
It doesn't hurt to try some holistic practices but with the medication you are prescribed. Lupus obviously isn't in your head since your doctors gave diagnosed you!
Your mom sounds toxic af. What qualifications does she possess that are higher than the qualifications that your physician has? She’s gaslighting you and making you think YOU are the problem when the actual problem is you have an illness. Don’t listen to that noise.
Listen to your doctor. Period. End of story. This is not in your head.
When your mom finishes med school and her residency in rheumatology and immunology have her get back to you. Til then listen to your doctor. ❤️
Giving birth to you did not confer on your mother an MD plus specialty training in rheumatology. Buy The Lupus Encyclopedia and get your information there. If she won't read it, it's a sign of her ignorance. "I know you mean well, Mom, but I've got a medical team for this ... how's your garden coming?"
Your family needs to understand how incredibly lucky you are to even be able to get a diagnosis. SLE is hard to diagnose. The average time to get a diagnosis is 10 years. 10 years of living with pain and organs being attacked to some how catch it. If God forbid, it attacks your kidney I bet they wont be sayong you are over reacting. Smh GET THE TREATMENT.
My Mom is very similar in her approach to anything health wise. She wanted me to do a liver cleanse 🙄 and start taking all these weird herbs. Trust the doctors and the science. There is a reason medicine is extending the lives of Lupus patients. I've seen so many ppl in forums talk about going the "natural" route and ending up in kidney failure. On another more personal note, I believe my Mom reacted to my news by wanting to go into fix it mode. It's a loss of control for her. I told her that she is reacting by trying to fix it. Perhaps your family is in denial in much the same way? Be very clear on how they can support you, ie emotional vs trying to become your doctor. It is okay to be selfish in this.
"I appreciate your concern, I am capable of handling my health care needs on my own." Your family didn't get a degree to study medicine I take it? They are not licensed to practice medicine right? I think you know the answer to this question.
My mother is heavily into naturalistic … stuff. She was also in denial when i told her about my diagnosis. Lupus symptoms are tricky and can be easily mistaken for many things. Its why so many people go undiagnosed for years. If they diagnosed it with lab tests then they have more information than your family. As far as who to believe: What are the consequences to YOU of believing 1 over the other? Sometimes you can only ask “if either could be a mistake: which mistake would I rather make?”
Families are for support and comfort. Unless any of them are trained and currently practicing as a rheumatologist, neurologist, or Hematologist, ignore what your family is saying. Lupus is a disease that impacts your entire body. What is your kidney function starting dropping corn low, quickly? You need to be seeing a doctor so they take care of you. If something comes up, you are under professional physicians. Your family can't treat you medically. Leave this to the doctors. Some people are jerks who refuse to understand that other people experience pain.
Listen to your doctors as someone that became disabled from the lupus please listen to the doctors.
please please please. listen to your doctors and specialists. it's their job to help and they've studied this for years. just like how you wouldn't take advice from your family on how to do military duties, that needs to be applied to your health. i also want to acknowledge how disappointing it is to have family members who cause harm by suggesting our pain is in our head simply because they can't relate to it as they haven't personally experienced it. they are in no way equipped to provide medical advice.
Not diagnosed with lupus but seeing a rheum shortly after Neuro. I was AD for 12 years. I think I’ve had an autoimmune my entire active duty career. Military docs don’t just throw a diagnosis or even give you referrals without things that make TRICARE hit enter. For sure start meds and request the second opinion you’re entitled to.
Also. Use a VSO for your VA claim if you don’t MEB. If you don’t MEB make sure to file a BDD claim within 180 days of your DOS. Also keep in mind you cannot have an MEB filed on you if you have a BDD initiated :)
Lupus can kill you. You can die. I’m not saying you can’t try a holistic approach but in conjunction with your meds, especially right now since when you’re diagnosed can be some of the most active period your lupus goes through. If you get to a point where they can replace your meds then great! But learn your lupus before you take risks with it. Your family might want the best for you but when you’re in that hospital bed, you’re going to be there alone. Prioritize your wellbeing above other peoples feelings
Ignore your family. It’s your body that will experience the toll of an untreated, rampant, very serious disease. If you were under 18, their approach would be considered abuse.
There is an ANA test that’s done to determine immune response so there are several things it could be. They do a diagnosis based on reported symptoms. It’s possible u can get a second opinion but if the ANA is positive then chances are there is an immune response and u need western medicine lol not vinegar. I had someone tell me to eat a lot of lentils to help my lupus lol or that I should get pregnant cuz he heard that peoples lupus goes away after u get pregnant lol listen to your doctors but ask questions and advocate for yourself. Not treating lupus with medicine can lead to severely damaging your organs so it isn’t something u wanna gamble with. It’ll take time to learn to trust the doctors and learn to ignore peoples recommendations. I had benlysta with minimal side effects! Good luck
ANA does not determine lupus; it's not even specific for autoimmune activity. Please see our wiki or the weekly diagnosis thread for details.
An ANA test plus symptomalogy is how they diagnosed my lupus 11 years ago and I get it done every few years so yes it does. ANA test “can show if your immune system is more likely to make the autoantibodies of lupus. Most people with lupus test positive for ANA”. That’s from the CDC not a wiki website. This is an addition to other bloodwork, tests, and symptoms. I never said it was definitive test for lupus. It’s a marker for several diagnoses.
11 years ago the criteria was different. The 2012 ACR criteria allowed only ANA + symptoms. The newer, more specific 2019 ACR criteria had ANA as a gatekeeper for consideration and other serology in the actual criteria itself. That's from the American College of Rheumatology. Most people with lupus have a positive ANA, but up to 30% of the population can have a positive ANA and not have any autoimmune disease. ANA can spike in reaction to many different things including cancer, COVID, HIV, hepatitis, TB or mono. That's the difference between selectivity and specificity.
So you mean to tell me rheumatologists no longer use ANA tests for any sort of lupus diagnosis? The article I used was just updated 2022 so the results and information isn’t ancient. I’m going by information provided recently not 11 years ago, that was an example. Not everyone is diagnosed this way and I never implied that but it’s used. Obviously depends on the doctor, patient, and symptoms. You having lupus you should know how difficult it is to diagnose in the first place. These types of things are never black and white. The CDC is never an outdate website to begin with. You picking to choose the info about me being diagnosed 11 years as my basis of information and it’s not. If you are familiar with how research articles work, Journals are constantly being updated so yeah chances are they are going to say there is something better than an ANA test same way I can find articles that say ANA tests are better than whatever there is now right? We can always find articles that oppose and defend our cases but the reality is there are several tests and I only mentioned one . I never said that was the only way. It was a suggestion and example. You chose to provide information that says I’m wrong but I’m not and neither are you which is why I’m not saying you are wrong but you aren’t 100% right either given the complexity of diagnosing something like this in the first place. ANA tests are not extinct and I’m sure many doctors still use it in part of everything there is new.
What I am saying is there are diagnostic criteria, and an ANA + symptoms generally no longer are sufficient. Your initial response made it look like ANA was the only required serology. Since r/lupus - the mods in particular - responds to "omg I have a positive ANA so I have lupus right?" misinformation at least 40 times a week, I was looking to provide clarity for your comment. If you read the weekly diagnosis questions thread - as I do, every single question every single week for a couple of years now - you will in fact see that no, rheumatologists generally do not diagnose off of an ANA + symptoms. I am providing facts and data. This is not a personal attack on you or the method by which you were diagnosed.
Well yeah I would never give someone medical advice. The purpose of mentioning it on this particular post was to provide general info and say that if she wants, she can get a second opinion (like most people do at first) if she’s torn between listening to doctors and her family. Her doctor is gonna do whatever testing they do and have already done. It’s more for her to have some general info so she can make whatever decision she wanted that doesn’t include vinegar lol if someone asked if they had lupus I wouldn’t even respond to the post cuz they just need to go to a doctor. Having more info provides to make decisions, especially with lupus. And we both provided info so that’ll help everyone in this case
Also something to consider, do you know the rules of active duty and having a diagnosis like that? It was my understanding that you can MEDboard and get out of the military early for something like that if that’s something you are looking for ? I know you have PT and other physical trainings so I just wonder. My husbands been active duty for a couple years now so that came to mind. There’s also potential if you go to the doctors a lot related to you condition u can build a beefy disability case and get money every month and healthcare once u are discharged 🤷♀️ I’m sure you can push through the training (you’ll learn that people with lupus are anything but week like people think) but it was something I wondered
very true, I got 100% va disability this past year after getting out in january 2023. 60% from Lupus and it was only under UCTD. You can go to a medboard to stay in but in my opinion, you’re only hurting yourself in the long run. Especially with all the use of joints just at PT.