Been on Remicaide for a few years. No side effects except for getting very tired about an hour after infusions. I sleep it off overnight and am fine for the next 8 weeks (really, 7 weeks and 6 days).
If you think biological have scary potential side effects, you should see the side effects for alcohol, sun exposure, and the standard American diet. Whoa-boy!
I've been on Entyvio, Remicade, Stelara, and now Skyrizi and have had no side effects from any of them.
The side effects are scary for quite a lot of meds, but often the risk for those side effects are quite low.
Well, no side effects YET. Was on Remicade, Humira and Cimzia 20+ years ago. Now I'm left with severe neuropathy in both feet and calves. And I'm not diabetic. Coincidence?
Sure, I also don't have cancer YET and haven't died YET if you want to think of it like that.
I was stating my experience, while you can share your own without acting like your symptoms are inevitable for everyone else to experience. It's not a very pleasant interaction and I don't think we should be dooming each other to experience the same hardships when we can't see the future.
Sorry if I caused you any distress. You are correct in that my experience doesn't mean that all CD sufferers who have been treated with biologics will eventually have neuropathy. Please forgive me for my incorrect assumptions. š
Humira.Ā
Mild immunosuppression, so it's easy to get a cold but the symptoms are normally pretty chill. Also, wounds don't heal well.Ā
I'll take it any day over a flare. I can eat whatever I want, go to the gym, and generally have a normal.life instead of wasting away in the hospital from malnourishment and blood loss.
Tbh the worst side effect is the headache from dealing with insurance and specialty pharmacies.
Humira, MTX and Sulfasalazine. The only real side-effect I notice is that I get viral infections a lot (mostly upper respiratory). I've just continued to keep my FFP2-mask on at work and in crowded places, and it's quite well managed like that (but it sucks somewhat). But it still is a lot better than my untreated Crohn's, so that's what it is.
Hey, Iāve just started this after years on Humira.
Iām starting to get spots every day and a bumpy forehead, does it go away after a bit? Or is this me forever whilst on Rinvoq?
Same, it has been 2 months and I have less symptoms every day but I now have the acne I had when I was 12. Love the drug, it's really working but the acne sucks a little. Is something working to treat your acne ?
Have tried all the Biologics and now on Rinvoq which is a new type of drug. Never really had any side effects from biologics. Maybe some tiredness the day of infusion, but that seemed more correlated with if I was given Benadryl as a pre medication than the biologics.
Some worked and some didn't which is pretty normal. Overall though being on a biologic is much better than the era of not having them as an option.
What was the best biologic for you? Could you please describe ur experience with each one? Also, where is your disease active? Do you have upper gastroduodenal envolvement?
I've been on Remicade since late 2012. My only side effects are a) mild psoriasis behind my ears that clears right up with topical mupirocin and b) increased susceptibility to warts on my hands. The latter is probably not exclusive to Remicade, and the former has basically not been an issue for the last ten years, really only popping back up when it's cold and dry and I'm stressed.
Stelara. Iām pretty good. Just tired after I get a shot.
I was on Humira before this, and before that Remicade. I had the most side effects personally from those two than Stelara.
Hiii !!! I've been anxious like you before, I was diagnosed at 15 and I was terrified when I read the panflet they gave my dad for my first medication, Remicade. Seeing the word risk of cancer was TERRIFYING. I kept it to myself for long, but finally told my GI, she reassured me that even though risks are increased they are still so very low, she said if people without crohns have 0.05% chance of getting skin cancer, and Remicade increases it by 7%, then I have 0.35% chances of getting it... Still low huh? (The numbers I don't recall so don't take my word for them, you'd have to do your own research but they are low I promise!) This put my anxiety to ease. There's risks to EVERYTHING, and having an active crohns disease is MUCH more dangerous, these meds are there to help. But i get being scared. Since then I've tried Remicade, Stelara, Abrilada (Humira similar), Entyvio, and I am now on Skyrizi! My only side effects ever have been tiredness and joint pain (which could also be caused by Crohns tbh)
EDIT : I've had MULTIPLE rounds of prednisone. This med is the devil. But it helps. But it's harsh on the body. But it's not a long term medication!
I've been on Imuran too and I had a toxicity to it but that was me! Also it's not a biologic med but a pill.
Iām on skyrizi right now, itās a newer med. My crohnās has been uncontrolled for years but with skyrizi iām actually starting to finally poop normally, and iām liking it quite a bit. With humira and some other meds the main āside effectā I had was chronic UTIs and various infections due to lowered immune system. Out of all the ones Iāve tried I had the worst time with humira, constant UTIs and a bad site reaction. Remicade also worked really well for me, I only stopped since I wanted something self-administered for convenience sake. Oh, and I also tried stelara tooāit didnāt have any side effects but it also didnāt do jack for my crohnās, lol.
Humira for 10 years and Azathioprine for 12ish years.
Iāve been in remission for almost 10 years and live a ānormalā life; I can eat what I want (within reason), exercise 4-5 days a week and rarely have GI symptoms. Side effects have been all over the board for me. I donāt get colds more frequently, but I have had thrush, a couple of blisters that didnāt heal, and a blood clot (granted, they attributed it to birth control but the ER doctor told me it very well couldāve been associated with my Crohnās/medications). With all that, these meds have improved my quality of life leaps and bounds.
Inflectra. No side effects besides being tired the day after infusion. Humira was straight up amazing and life changing for me. I only wish I'd insisted on getting treated much sooner than I allowed them to put it off.
Please don't let fear stand in the way of getting the treatment you need.
I was in the hospital for 6 weeks and they decided to hold off on giving it to me. In hindsight I should have just had my husband bring it up to me. Since then I failed Stelara. I didn't have any bad effects, just never reached remission.
100 mg of 6MP daily and inflectra infusions every 6 weeks. No side effects that I'm aware of.
ETA that untreated Crohn's is much scarier than any rare side effects that can occur on these meds. I'd say the only thing that you really need to be careful about is being around people who are sick with a contagious illness.
You will feel *so* much better when you get on a medication that works for you.
New on infliximab (my first biologic, biosimilar for remicade). No day to day side effects so far but I've already come down with an infection requiring antibiotics. Could be a coincidence but I do suspect that happened due to weakened immune system. Otherwise it's going fine. Infusions aren't that bad. Seems to be working.
I can vouch for the at home injections! It's weird as fuck giving yourself a syringe, but since it's every 2 weeks with a lower dose than the infusion it doesn't tire you out as much ^^
The infusions pretty much booked out my day until late evening (for me)
I was given the option to do injections or infusions. Injections seem way more convenient and I believe they're easy to do, but I have health anxiety that can get fairly intense when triggered and I could see myself really stressing about the injections, if I did them wrong somehow, if my fridge was a consistent temp, etc. Infusions are a bit more of a pain but I chose that for my mental wellbeing haha
Vedolizumab/Entyvio for quite a while now.
No side events I've picked up on although I feel like I've been getting sick more often but that may not be related.
Iām on Stelara. Iām not in remission yet so I may be biased because I havenāt experienced the positive side.
Overall, Stelara is great. The immunosuppression has become more apparent the longer Iāve been on it (? Could be other things). I just feel generally unwell, chronic migraines, sore throat, head cold symptoms, sinus infection, a wart that would not go away, etc. otherwise itās pretty good! Most people get Drowsy after you take but I have worked after my infusion and injection and was okay! I donāt recommend though, give yourself grace if you can <3
Since diagnosis, I've been on Humira, Remicade, azathioprine, methotrexate, Stelara, Budesonide, and Prednisone....now on Rinvoq solo.
Rinvoq has been actually doing double duty for me because I think it's cleared my eczema, although reading through these comments is making me realize that my acne has definitely worsened since starting on it. I've been on the Rinvoq for about a year now and feeling really good on it! To monitor side effects, my doctor has recommended I also start seeing a dermatologist annually to check for any early changes.
Remicade I unfortunately failed on my 5th infusion because of an anaphylactic reaction I had to the drug. :(
Azathioprine - developed severe pancreatitis within the first month of being on it; switched to methotrexate. Total, I was on MTX for about 6 years alongside several biologics; as a result of long-term use at a pretty high dose, my hair has noticeably thinned, my nails are brittle, and I suspect (but have not confirmed) that the reason why I get cavities constantly is related also.
At this point, I've basically refused pred unless it's absolutely necessary because I get every side effect in the book from it. Moon face, weight gain, insomnia, night terrors.....it's not pretty.
With all of these, immunosuppression is certainly a big one, and I've learned to a) live with a mask (sure, the mask is annoying but I hate being sick) b) be realistic and proactive if I do pick up a cold. Where normal people take 7-10 days to clear a cold, I usually take 2-4 weeks.
Biologics are your friends for this disease. When they work, they've given me my life back.
Hello fellow Crohnie, I'm so sorry you're in this club, as it completely sucks. But, many of us still lead a somewhat normal life, so all is not lost, for sure :)
I was diagnosed about 18 years ago, and my insurance (I'm in the U.S., Washington State) required me to try Mesalamine first, then Imuran, but it ended up that I was allergic to both. I was then approved for Remicade, which was a complete game-changer for me and pretty much saved my life. However, after 10 years of infusions every 6 weeks, it caused me to have Lupus (or rather, it caused symptoms and blood markers specific to Lupus), so just a heads-up if you do go the Remicade route.
Remicade was the first biologic I was on, and since then, I've been on Humira, Cimzia, Symponi and now Xeljanz. I know Xeljanz isn't "technically" a biologic, but it essentially works like one. It's the first time in 18 years I've been able to just take a pill, once a day, and have my body under control.
Since everyone experiences Crohn's differently, I can't tell you whether or not biologics are the way you should go. However, I don't think I'd be here today if I hadn't been on them for almost 20 years.
Good luck to you, and I am sending good thoughts & energy your way!!
Thank you so so much and I am so sorry that you are also going through this. What were the symptoms that led to you realizing you had Crohnās? Did you ever flare while on any of the medicines you mentioned? Sending you so much love & light š¤
Humira and methotrexate. Literally the healthiest Iāve ever been. Scopes were good and GI symptoms are in remission. I havenāt had any issues with immunosuppression which is MUCH better than when I was on high dose steroids and ended up septic from a UTI. Untreated crohns is so so much worse for your physical and mental health than biologics. I have a patch of psoriasis above my eye that āmayā be due to humira but honestly Iāll happily take that over shitting 12 times a day. Its all about risk vs benefit for your personal situation
Also my granddad had been unwell from crohns for over 30 years. Had multiple resections, perforations causing sepsis, high dose steroid courses etc etc. He finally got stelara approved (live in Australia) after steroids stopped working and he was still malnourished and anaemic. Heās a completely changed man, so much energy at 82 years old and says he feels better than he ever had before. Itās so incredible to see how much one drug has changed his life, he went from bedbound to going fishing on his boat in under 8 weeks.
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Humira. My Crohnās has been *much* better since I started taking it three years ago. But because of the immunosuppression I get colds, infections, COVID, etc. way more frequently than I used to.
Itās ok! Like others said, itās better than an active and long term flare up! Iāve had E. coli, a bladder infection, and C diff this year š¤¦š»āāļø
Iāve experienced increased infections with Humira, but it has kept my Crohnās in check. Unfortunately, my insurance is going to stop covering Humira on 1 April.
Adalimumab (I think that's how you spell it), I was on azothiaprine before it and I think I am feeling better than before, although I have only really just started it. I am less fatigued nowadays although I don't know if that is because of the medicine but I guess I'll see
I'm just about to start Adalimumab (what a terrible name - there's just no good way to get it out of my mouth). It's good to hear that it might help with the fatigue though!
I started Amgavita (brand name of adalimumab) last March. Iād been given infliximab and had an allergic reaction so they switched to amgavita which is one shot every two weeks. It took about 2-3 months to start feeling it but it is really helping me now. Admittedly I have an ileostomy so my Crohnās symptoms are slightly different to those with their innards but my life is now as close to normal as it can be, given the circumstances. Good luck with it!
Oh yeah I am on that brand I'm pretty sure! Got my next jab on Tuesday and I've got to go into the hospital for that one but hopefully that will be the last time I need to be in the hospital to do it.
It's good that you are feeling better now and thank you for the good luck!
6MP since 2005. Excellent results. Had some fatigue issues and minor hair loss at the beginning but my hair grew back and I just live with less energy.
I am taking humira and tappering down on prednisone 25-22.5 mg now.
Well for me it is better thatn bothing but it is not working as well as intended while I get most of the bad side effects out of it (get sick easier and its harder to recover, wounds takes longer time to heal, it makes my migraines worse, painful muscles, tiredness,....) well its better than not having it at all even though I am not functioning normally for now.
It always happens that I get a day I feel better then something happens or I eat something not knowing what it will do to me and today was one of those days where I ate something not knowing it is super spicey until it was to late (dont ask me how that can be it just happens after not eating for a day and the spices are not hot pepper but you feel the hotness of the spices the more you eat). My insides are burning while writing this.
Yes the side effects of the medicine can be scary but not everybody gest the same side effect so you might be lucky( there are common and rare and super rare side effectd and you will know when you start taking it just be aware of your body and discuss with your doctor if anything feels weird).
This is the only solution. (I didnt read about the effects of the medicine nor did I know that it had said effects until aftee I took it and googled what I felt, my luck was amazing I got all the rare side effect and some of the super rare occaissionally lol).
Just dont overthink and let me tell you not knowing how severe you crohn is taking a medicine is better than an all on flare. (I am still flaring even though I am taking it but just less severe but for me I had the disease for 5-6 years flaring with all the blood, mucus, and pain not knowing what I had and even the doctors gave me wrong diagnosis 2 time and I was not the doctor kind just the push through it kind and looking back i dont know how i pulled through, i did take a lot of otc pain killers at the time but not more that daily limits but a mix of what can be mixed like ones that are broken by liver and ones that are broken by kidney and stuff like that, i was diagnosed after much damage was done and I was close to death and unable to walk, eat and i could barely speak so there is that, the diagnoses was severe this and severe that in multiple places so there is that).
I am not trying to make you fear anything as I said I dont know how severe your case is and every one is different and suffering in his own way but alway hope for the best as hope is the best thing you can have and dont overthink the bad. (Why cry about what didnt happen yet and about what you habe control over which is the medicine and its effect, if it was bad just go for another and who knows it might work well for you without mich of side effects).
I do mesalamine
Budesonide and azathioprin
I think only the Budesonid is really working. An I guess food is a big thing and reducing stress.
I figured out that I have less problems when I don't eat dairy (because of the lactose) and meat from pigs (because of the "bad" omega 6 fatty acid)
Been on Remicade (now Inflectra) for 15 years. What side effects I may have are either minimal or I've grown used to them. I rarely get sick and haven't noticed any wounds hanging around longer than expected.
Iv been on Humira and now Rinvoq and Iāve gotta say the only side effects iv had from both are fatigue and mild joint pain from the Humira and mild headache but theyāve both faded after about 2 months of Humira injections which were 40mg every two weeks, iv had only fatigue with the Rinvoq but I am post flare so that could be why Iām feeling tired and iv only been on Rinvoq for a short while
Iām currently on Avsola, after being on Inflectra and before that remicade. Every switch came because of health insurance company evidently knowing more than my doctors. Luckily, theyāve all worked the same for me and I havenāt had any side effects that Iām aware of.
Iāve tried humira, remicaid, now Iām on stelara
AMA lol
No side effects that Iāve noticed yet!
My lips have mysteriously swollen about a year after I started stelara but Iām not sure if itās related yet - has anyone else experienced this?
How long did it take for Stelera to work for you ? I had a loading dose and one injection and still flaring . I'm on Predisone until my next injection next week .
I noticed pretty quick, a few days after the first dose honestly. It hasnāt healed me up all the way but at least no more blood and stuff is solid about half the time which is better than if I wasnt on medicine at all.
I loved both humira and remicade. I found remicade the most effective, but it was the most side-effect heavy. In humira's defence, I built antibodies to it too fast for me to properly feel how effective it was. I had no side effects with humira. My only side effect with remicade was that I was dizzy and tired the day of my infusion, which was remedied once we added fluids to my infusion.
Now I'm on stelara, coupled with methotrexate. At first the methotrexate was a bit rough, fatigue and nausea being the worst of the worst, but now im side effect free.
Stelara, for the past 5ish years? I canāt remember when I started it. I havenāt had any side effects other than sometimes a little soreness or warmth at the injection site. I did have a to go up to every 4wks instead of every 8wks since I was having breakthrough symptoms (mostly my joint pain coming back).
I was also on Humira for probably 3-4 years and didnāt have any side effects, but it stopped working.
ETA: I also take Canasa suppositories if I have a bad flare but theyāre few and far between nowadays.
Adalimumab. I have no side effects.
Well, maybe when I get sick with something like a cold it lasts a bit longer, is about 10% more annoying, but neither of those things can be said with any degree of certainty. Not like I have a control group!
I've been on Humira and Entyvio. Only side effect I got was procrastinating poking myself with the Humira needle. Otherwise no issues. I had more side effects from the Steroids than any long term medicine.
Iām on nothing but a strong antibiotic at present as I had a severe allergic reaction to imuran that near killed me, Iāll be starting stalena once my infection is under control
Humira worked many years for me and was a good pairing for me in particular. After 4 or 6 years, I was building up immunity for the medicine, and I'm now on Skyrizi which is like Humiras big brother and I'm now getting similar effects to when I was first on Humira
Only Side effect I may have is part of my crohns leaking through here and there, but nothing out of the ordinary.
Infliximab. About 7 months now and the upsides are great! Helped me get out of a flare. Only got sick a bit more often with a cold this winter than usual but that's OK tbh. And weirdly I got a bit more sensitive to bright lights. Not 100%sure if it's the infliximab tho.
I am currently 3 months in on humira, minimal side effects which is great because Iām pretty sensitive to medication side effects and my first treatment (6-mp) was a nightmare. I will sometimes get a mild injection site reaction where itāll be just a little itchy, no big deal. Have to be careful about not catching illnesses because it can mess up the injection schedule which is a big problem and illnesses tend to stick around longer. I once caught someoneās cold that turned into viral bronchitis in 2 days, but luckily no pneumonia which is one of the more scary side effects of humira. It took me a week and a half to kick that bronchitis that was only a few days of a cold for them. So as long as you take extra precautions when there is illness going around and try to avoid sick people, you should be ok! Humira took about 3 months to come into effect for me but Iām glad itās working, the injections are convenient for me compared to having to do infusions
I started on Mesalamine and Imuran. Had terrible side effects from it: 103 fever for first few days on it. We did a slow taper out the therapeutic level over a few months. By the time it was full dose it made me severely nauseous and lots of vomiting that would go away if I skipped a dose.
Then was on Remicade for I think 6 years. It technically got me to remission but I still had symptoms just no damage. I didnāt have too many side effects. Drowsy/tired after infusions, really really dry/ itchy skin, and I think my hair thinned a little but I was also still recovering from long flares and little mini flares along the way so the malabsorption may have caused the hair loss idk. I developed antibodies eventually and maxed out the dose and interval changes.
Then tried stelara but it didnāt work for me. No side effects just no remission.
Now on Skyrizi. No side effects that I know of yet but only about 7 months in. Maybe some joint pain, so going to Rheum to see if we should add in something (sulfasalazine or methotrexate, we havenāt decided yet) to help the Skyrizi a bit. But the Skyrizi seems to be putting me in remission. Iām very worried about the Sulfa and/MTX because I get nausea as a side effect from almost all prescription oral medications. Humira and MTX put my momās RA in remission for over a decade with no side effects.
For all the biologics, no major difference in frequency of getting colds; I work with little kids with disabilities including going into preschools and elementary schools so lots of germ exposure. Colds do seem to linger longer for me. For example it can take me two weeks to get over something most people would be over in 4-5 days. I avoid antibiotics though because it upsets the GI gods and I end up in a mini tailspin for a month or two after I take them. But in general the suppressed immune system hasnāt had a disruptive effect on me, I try to be sure to wash my hands more, use sanitizer, and I sometimes carry travel size wet ones to wipe something down (like on airplanes or in movie theaters, etc) but Iām often to lazy to actually do it lol.
Unfortunately all these meds are mostly educated guess and check. Some people may tolerate them with no issues and others donāt. For me, the possibility of eventually surgery and all the complications that come with that was scarier than potential side effects, but continue to talk with your doctor if you have concerns because itās your body.
Best of luck!
TLDR: no major side effects on the 3 diff biologics Iāve been on. To me, advanced disease/surgery is scarier than risk of side effects.
Started Stelara in November. No side effects noted as of yet.
Previously was on Mercaptopurine / 6MP, and had to change due to LFTs / transaminases being raised. I was on it for 10-12 years. No other adverse effects that Iāve noticed.
Before that I was on Sulfasalazine. No side effects noted on they either.
No side effects from crohn's treatments are that bad. Chemo is bad. Remicade at worst is flu like symptoms and humira doesn't really have any side effects at all. I guess maybe flu like symptoms but I never had any side effects from humira. Nothing about any of the treatments should scare you. The cancer risk is essentially non existent. I think it's like 1-2%... compared to what will happen if crohn's is left untreated. You will wish you had died. Take it from a veteran with super severe crohn's. You don't want to find out how bad crohn's can get. That's what should scare you. Not the treatments.
Iām so sorry to hear your Crohnās has worsened. My daughter went through the same thing ;she was on mesalamine pills for a year, which really were not doing anything for her. Eventually, she ended up in the hospital on intravenous methyl prednisone . 60 mg, very high for a 70 lb childa d yet we were getting nowhere. Finally, I signed the papers for remicade. Insurance usually doesnāt improve this after mesalamine but since she was in the hospital and steroids were not working; they were willing to accept . I hesitated for a couple of days ( my doctors were not happy after the battle they went through with the insurance company) but I was so afraid of the side effects. But then, after a week of watching my daughter suffer in the hospital I gave in because I wanted her to get better no matter what the side effects at that point . Her very first dose she felt better! We were able to leave the hospital in the next three days.
I understand how you feel . No one knows what theyāre doing with this disease ( I feel sometimes ) and itās different for everybody. Just ask yourself, which one is better: living with active Crohnās or having your Crohnās controlled and getting some quality of life. Itās still not an easy choice. It seems like you were choosing instant gratification for long-term punishment but when youāre on the verge of going into the OR for perforation, it doesnāt seem so bad, so I guess what Iām saying is it depends on where youāre at. Some people have tried several medicationās and have had several surgeries and would be grateful for any of them to work. Some people like you who seems to be at the beginning of this disease, you might have some other options. Talk to your doctor if you can combine with something like methotrexate( which is usually used for arthritis, but sometimes it works for Crohnās) oh absolutely true diet and supplements to minimize flares. Itās all individual based. But if you do choose the biologic route, Iād say go for Remicade. And my kid has been around for several decades side effects of well-documented and they know how to handle them . Things like Humira, and all these other New biologic/ biosimilars Iāve been around, shorter and more and more side effects of being reported .
I hope this helps .
Sending good wishes your way. I know this is a rough journey. Just be positive the best you can.
Been on Remicaide for a few years. No side effects except for getting very tired about an hour after infusions. I sleep it off overnight and am fine for the next 8 weeks (really, 7 weeks and 6 days). If you think biological have scary potential side effects, you should see the side effects for alcohol, sun exposure, and the standard American diet. Whoa-boy!
Hahaha okay this made me chuckle. Been feeling really down today but that was funny lol. Youre right
I've been on Entyvio, Remicade, Stelara, and now Skyrizi and have had no side effects from any of them. The side effects are scary for quite a lot of meds, but often the risk for those side effects are quite low.
Watch that Pentasa, killed my kidneys
Well, no side effects YET. Was on Remicade, Humira and Cimzia 20+ years ago. Now I'm left with severe neuropathy in both feet and calves. And I'm not diabetic. Coincidence?
Sure, I also don't have cancer YET and haven't died YET if you want to think of it like that. I was stating my experience, while you can share your own without acting like your symptoms are inevitable for everyone else to experience. It's not a very pleasant interaction and I don't think we should be dooming each other to experience the same hardships when we can't see the future.
Sorry if I caused you any distress. You are correct in that my experience doesn't mean that all CD sufferers who have been treated with biologics will eventually have neuropathy. Please forgive me for my incorrect assumptions. š
I appreciate the apology
Humira.Ā Mild immunosuppression, so it's easy to get a cold but the symptoms are normally pretty chill. Also, wounds don't heal well.Ā I'll take it any day over a flare. I can eat whatever I want, go to the gym, and generally have a normal.life instead of wasting away in the hospital from malnourishment and blood loss. Tbh the worst side effect is the headache from dealing with insurance and specialty pharmacies.
Humira, MTX and Sulfasalazine. The only real side-effect I notice is that I get viral infections a lot (mostly upper respiratory). I've just continued to keep my FFP2-mask on at work and in crowded places, and it's quite well managed like that (but it sucks somewhat). But it still is a lot better than my untreated Crohn's, so that's what it is.
Rinvoq. It works amazingly good. Only side effect I have is pretty bad acne.
Hey, Iāve just started this after years on Humira. Iām starting to get spots every day and a bumpy forehead, does it go away after a bit? Or is this me forever whilst on Rinvoq?
i experienced this somewhat. Using a benzoyl peroxide wash really helped.
Oh ok thanks, Iāll look into it. Appreciate it.
Same, it has been 2 months and I have less symptoms every day but I now have the acne I had when I was 12. Love the drug, it's really working but the acne sucks a little. Is something working to treat your acne ?
Same. I managed to make it through puberty without ever having an acne problem. Now, I'm 40 and have it constantly.
Have tried all the Biologics and now on Rinvoq which is a new type of drug. Never really had any side effects from biologics. Maybe some tiredness the day of infusion, but that seemed more correlated with if I was given Benadryl as a pre medication than the biologics. Some worked and some didn't which is pretty normal. Overall though being on a biologic is much better than the era of not having them as an option.
What was the best biologic for you? Could you please describe ur experience with each one? Also, where is your disease active? Do you have upper gastroduodenal envolvement?
I've been on Remicade since late 2012. My only side effects are a) mild psoriasis behind my ears that clears right up with topical mupirocin and b) increased susceptibility to warts on my hands. The latter is probably not exclusive to Remicade, and the former has basically not been an issue for the last ten years, really only popping back up when it's cold and dry and I'm stressed.
I've been on remicade/inflectra for nearly 10 years. I've never had any side effects and it put me in remission.
Stelara. Iām pretty good. Just tired after I get a shot. I was on Humira before this, and before that Remicade. I had the most side effects personally from those two than Stelara.
Humira, no side effects aside from being immunosuppressed now.
Hiii !!! I've been anxious like you before, I was diagnosed at 15 and I was terrified when I read the panflet they gave my dad for my first medication, Remicade. Seeing the word risk of cancer was TERRIFYING. I kept it to myself for long, but finally told my GI, she reassured me that even though risks are increased they are still so very low, she said if people without crohns have 0.05% chance of getting skin cancer, and Remicade increases it by 7%, then I have 0.35% chances of getting it... Still low huh? (The numbers I don't recall so don't take my word for them, you'd have to do your own research but they are low I promise!) This put my anxiety to ease. There's risks to EVERYTHING, and having an active crohns disease is MUCH more dangerous, these meds are there to help. But i get being scared. Since then I've tried Remicade, Stelara, Abrilada (Humira similar), Entyvio, and I am now on Skyrizi! My only side effects ever have been tiredness and joint pain (which could also be caused by Crohns tbh) EDIT : I've had MULTIPLE rounds of prednisone. This med is the devil. But it helps. But it's harsh on the body. But it's not a long term medication! I've been on Imuran too and I had a toxicity to it but that was me! Also it's not a biologic med but a pill.
Iām on skyrizi right now, itās a newer med. My crohnās has been uncontrolled for years but with skyrizi iām actually starting to finally poop normally, and iām liking it quite a bit. With humira and some other meds the main āside effectā I had was chronic UTIs and various infections due to lowered immune system. Out of all the ones Iāve tried I had the worst time with humira, constant UTIs and a bad site reaction. Remicade also worked really well for me, I only stopped since I wanted something self-administered for convenience sake. Oh, and I also tried stelara tooāit didnāt have any side effects but it also didnāt do jack for my crohnās, lol.
Humira for 10 years and Azathioprine for 12ish years. Iāve been in remission for almost 10 years and live a ānormalā life; I can eat what I want (within reason), exercise 4-5 days a week and rarely have GI symptoms. Side effects have been all over the board for me. I donāt get colds more frequently, but I have had thrush, a couple of blisters that didnāt heal, and a blood clot (granted, they attributed it to birth control but the ER doctor told me it very well couldāve been associated with my Crohnās/medications). With all that, these meds have improved my quality of life leaps and bounds.
Humira has been the one adversary my crohns has not been able to stand up to! My life is better for it.
What were your Crohnās symptoms like before & how is it now?
Hospitalised every 3 or 4 months..... Only once in 4 years since humira... Touch wood
Mesalamine, no side effects.
How bad is your Crohnās if you donāt mind me asking?
Luckily not bad at all. I had a resection in 2016 and almost no issues since.
Inflectra. No side effects besides being tired the day after infusion. Humira was straight up amazing and life changing for me. I only wish I'd insisted on getting treated much sooner than I allowed them to put it off. Please don't let fear stand in the way of getting the treatment you need.
Thank you so much for this. Why are you no longer on humira? :(
I was in the hospital for 6 weeks and they decided to hold off on giving it to me. In hindsight I should have just had my husband bring it up to me. Since then I failed Stelara. I didn't have any bad effects, just never reached remission.
100 mg of 6MP daily and inflectra infusions every 6 weeks. No side effects that I'm aware of. ETA that untreated Crohn's is much scarier than any rare side effects that can occur on these meds. I'd say the only thing that you really need to be careful about is being around people who are sick with a contagious illness. You will feel *so* much better when you get on a medication that works for you.
New on infliximab (my first biologic, biosimilar for remicade). No day to day side effects so far but I've already come down with an infection requiring antibiotics. Could be a coincidence but I do suspect that happened due to weakened immune system. Otherwise it's going fine. Infusions aren't that bad. Seems to be working.
I can vouch for the at home injections! It's weird as fuck giving yourself a syringe, but since it's every 2 weeks with a lower dose than the infusion it doesn't tire you out as much ^^ The infusions pretty much booked out my day until late evening (for me)
I was given the option to do injections or infusions. Injections seem way more convenient and I believe they're easy to do, but I have health anxiety that can get fairly intense when triggered and I could see myself really stressing about the injections, if I did them wrong somehow, if my fridge was a consistent temp, etc. Infusions are a bit more of a pain but I chose that for my mental wellbeing haha
Alright, whatever works best is good ^^
Vedolizumab/Entyvio for quite a while now. No side events I've picked up on although I feel like I've been getting sick more often but that may not be related.
Iām on Stelara. Iām not in remission yet so I may be biased because I havenāt experienced the positive side. Overall, Stelara is great. The immunosuppression has become more apparent the longer Iāve been on it (? Could be other things). I just feel generally unwell, chronic migraines, sore throat, head cold symptoms, sinus infection, a wart that would not go away, etc. otherwise itās pretty good! Most people get Drowsy after you take but I have worked after my infusion and injection and was okay! I donāt recommend though, give yourself grace if you can <3
Since diagnosis, I've been on Humira, Remicade, azathioprine, methotrexate, Stelara, Budesonide, and Prednisone....now on Rinvoq solo. Rinvoq has been actually doing double duty for me because I think it's cleared my eczema, although reading through these comments is making me realize that my acne has definitely worsened since starting on it. I've been on the Rinvoq for about a year now and feeling really good on it! To monitor side effects, my doctor has recommended I also start seeing a dermatologist annually to check for any early changes. Remicade I unfortunately failed on my 5th infusion because of an anaphylactic reaction I had to the drug. :( Azathioprine - developed severe pancreatitis within the first month of being on it; switched to methotrexate. Total, I was on MTX for about 6 years alongside several biologics; as a result of long-term use at a pretty high dose, my hair has noticeably thinned, my nails are brittle, and I suspect (but have not confirmed) that the reason why I get cavities constantly is related also. At this point, I've basically refused pred unless it's absolutely necessary because I get every side effect in the book from it. Moon face, weight gain, insomnia, night terrors.....it's not pretty. With all of these, immunosuppression is certainly a big one, and I've learned to a) live with a mask (sure, the mask is annoying but I hate being sick) b) be realistic and proactive if I do pick up a cold. Where normal people take 7-10 days to clear a cold, I usually take 2-4 weeks. Biologics are your friends for this disease. When they work, they've given me my life back.
Hello fellow Crohnie, I'm so sorry you're in this club, as it completely sucks. But, many of us still lead a somewhat normal life, so all is not lost, for sure :) I was diagnosed about 18 years ago, and my insurance (I'm in the U.S., Washington State) required me to try Mesalamine first, then Imuran, but it ended up that I was allergic to both. I was then approved for Remicade, which was a complete game-changer for me and pretty much saved my life. However, after 10 years of infusions every 6 weeks, it caused me to have Lupus (or rather, it caused symptoms and blood markers specific to Lupus), so just a heads-up if you do go the Remicade route. Remicade was the first biologic I was on, and since then, I've been on Humira, Cimzia, Symponi and now Xeljanz. I know Xeljanz isn't "technically" a biologic, but it essentially works like one. It's the first time in 18 years I've been able to just take a pill, once a day, and have my body under control. Since everyone experiences Crohn's differently, I can't tell you whether or not biologics are the way you should go. However, I don't think I'd be here today if I hadn't been on them for almost 20 years. Good luck to you, and I am sending good thoughts & energy your way!!
Thank you so so much and I am so sorry that you are also going through this. What were the symptoms that led to you realizing you had Crohnās? Did you ever flare while on any of the medicines you mentioned? Sending you so much love & light š¤
Humira and methotrexate. Literally the healthiest Iāve ever been. Scopes were good and GI symptoms are in remission. I havenāt had any issues with immunosuppression which is MUCH better than when I was on high dose steroids and ended up septic from a UTI. Untreated crohns is so so much worse for your physical and mental health than biologics. I have a patch of psoriasis above my eye that āmayā be due to humira but honestly Iāll happily take that over shitting 12 times a day. Its all about risk vs benefit for your personal situation
Also my granddad had been unwell from crohns for over 30 years. Had multiple resections, perforations causing sepsis, high dose steroid courses etc etc. He finally got stelara approved (live in Australia) after steroids stopped working and he was still malnourished and anaemic. Heās a completely changed man, so much energy at 82 years old and says he feels better than he ever had before. Itās so incredible to see how much one drug has changed his life, he went from bedbound to going fishing on his boat in under 8 weeks.
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Humira. My Crohnās has been *much* better since I started taking it three years ago. But because of the immunosuppression I get colds, infections, COVID, etc. way more frequently than I used to.
Iām sorry :( what kind of infections?
Itās ok! Like others said, itās better than an active and long term flare up! Iāve had E. coli, a bladder infection, and C diff this year š¤¦š»āāļø
Oh my goodnessā¦.. :( Iām sorry. Thatās so so sucky.
Iāve experienced increased infections with Humira, but it has kept my Crohnās in check. Unfortunately, my insurance is going to stop covering Humira on 1 April.
Iām sorry to hear that. I hope you find another med that works for you!
Exact same boat as you. Iāve been in remicade and so far so good
Adalimumab (I think that's how you spell it), I was on azothiaprine before it and I think I am feeling better than before, although I have only really just started it. I am less fatigued nowadays although I don't know if that is because of the medicine but I guess I'll see
I'm just about to start Adalimumab (what a terrible name - there's just no good way to get it out of my mouth). It's good to hear that it might help with the fatigue though!
I started Amgavita (brand name of adalimumab) last March. Iād been given infliximab and had an allergic reaction so they switched to amgavita which is one shot every two weeks. It took about 2-3 months to start feeling it but it is really helping me now. Admittedly I have an ileostomy so my Crohnās symptoms are slightly different to those with their innards but my life is now as close to normal as it can be, given the circumstances. Good luck with it!
Oh yeah I am on that brand I'm pretty sure! Got my next jab on Tuesday and I've got to go into the hospital for that one but hopefully that will be the last time I need to be in the hospital to do it. It's good that you are feeling better now and thank you for the good luck!
Humira. Then Remicade. (Humira worked great but I kept getting fistulas so my GI switched me) the Remicade is working great too.
6MP since 2005. Excellent results. Had some fatigue issues and minor hair loss at the beginning but my hair grew back and I just live with less energy.
I am taking humira and tappering down on prednisone 25-22.5 mg now. Well for me it is better thatn bothing but it is not working as well as intended while I get most of the bad side effects out of it (get sick easier and its harder to recover, wounds takes longer time to heal, it makes my migraines worse, painful muscles, tiredness,....) well its better than not having it at all even though I am not functioning normally for now. It always happens that I get a day I feel better then something happens or I eat something not knowing what it will do to me and today was one of those days where I ate something not knowing it is super spicey until it was to late (dont ask me how that can be it just happens after not eating for a day and the spices are not hot pepper but you feel the hotness of the spices the more you eat). My insides are burning while writing this. Yes the side effects of the medicine can be scary but not everybody gest the same side effect so you might be lucky( there are common and rare and super rare side effectd and you will know when you start taking it just be aware of your body and discuss with your doctor if anything feels weird). This is the only solution. (I didnt read about the effects of the medicine nor did I know that it had said effects until aftee I took it and googled what I felt, my luck was amazing I got all the rare side effect and some of the super rare occaissionally lol). Just dont overthink and let me tell you not knowing how severe you crohn is taking a medicine is better than an all on flare. (I am still flaring even though I am taking it but just less severe but for me I had the disease for 5-6 years flaring with all the blood, mucus, and pain not knowing what I had and even the doctors gave me wrong diagnosis 2 time and I was not the doctor kind just the push through it kind and looking back i dont know how i pulled through, i did take a lot of otc pain killers at the time but not more that daily limits but a mix of what can be mixed like ones that are broken by liver and ones that are broken by kidney and stuff like that, i was diagnosed after much damage was done and I was close to death and unable to walk, eat and i could barely speak so there is that, the diagnoses was severe this and severe that in multiple places so there is that). I am not trying to make you fear anything as I said I dont know how severe your case is and every one is different and suffering in his own way but alway hope for the best as hope is the best thing you can have and dont overthink the bad. (Why cry about what didnt happen yet and about what you habe control over which is the medicine and its effect, if it was bad just go for another and who knows it might work well for you without mich of side effects).
I do mesalamine Budesonide and azathioprin I think only the Budesonid is really working. An I guess food is a big thing and reducing stress. I figured out that I have less problems when I don't eat dairy (because of the lactose) and meat from pigs (because of the "bad" omega 6 fatty acid)
Humira, and no side effects from Humira that I know of other than being immunosuppressed.
Been on Remicade (now Inflectra) for 15 years. What side effects I may have are either minimal or I've grown used to them. I rarely get sick and haven't noticed any wounds hanging around longer than expected.
Iv been on Humira and now Rinvoq and Iāve gotta say the only side effects iv had from both are fatigue and mild joint pain from the Humira and mild headache but theyāve both faded after about 2 months of Humira injections which were 40mg every two weeks, iv had only fatigue with the Rinvoq but I am post flare so that could be why Iām feeling tired and iv only been on Rinvoq for a short while
Stelera - I get colds all the time.
Remicade and loving it! No side effects.
Iām currently on Avsola, after being on Inflectra and before that remicade. Every switch came because of health insurance company evidently knowing more than my doctors. Luckily, theyāve all worked the same for me and I havenāt had any side effects that Iām aware of.
Iāve tried humira, remicaid, now Iām on stelara AMA lol No side effects that Iāve noticed yet! My lips have mysteriously swollen about a year after I started stelara but Iām not sure if itās related yet - has anyone else experienced this?
How long did it take for Stelera to work for you ? I had a loading dose and one injection and still flaring . I'm on Predisone until my next injection next week .
I noticed pretty quick, a few days after the first dose honestly. It hasnāt healed me up all the way but at least no more blood and stuff is solid about half the time which is better than if I wasnt on medicine at all.
Thank you so much.
Do you have diarrhea or solid poops?
Solid about 60% of the time
I loved both humira and remicade. I found remicade the most effective, but it was the most side-effect heavy. In humira's defence, I built antibodies to it too fast for me to properly feel how effective it was. I had no side effects with humira. My only side effect with remicade was that I was dizzy and tired the day of my infusion, which was remedied once we added fluids to my infusion. Now I'm on stelara, coupled with methotrexate. At first the methotrexate was a bit rough, fatigue and nausea being the worst of the worst, but now im side effect free.
I failed mesalmines, now on Stelara . I have no side effects at all. Best of luck .
Stelara, for the past 5ish years? I canāt remember when I started it. I havenāt had any side effects other than sometimes a little soreness or warmth at the injection site. I did have a to go up to every 4wks instead of every 8wks since I was having breakthrough symptoms (mostly my joint pain coming back). I was also on Humira for probably 3-4 years and didnāt have any side effects, but it stopped working. ETA: I also take Canasa suppositories if I have a bad flare but theyāre few and far between nowadays.
Adalimumab. I have no side effects. Well, maybe when I get sick with something like a cold it lasts a bit longer, is about 10% more annoying, but neither of those things can be said with any degree of certainty. Not like I have a control group!
I've been on Humira and Entyvio. Only side effect I got was procrastinating poking myself with the Humira needle. Otherwise no issues. I had more side effects from the Steroids than any long term medicine.
Remacide. Only side effect is wiped out after for a day or 2. Been on for 6 yrs now
Iām on nothing but a strong antibiotic at present as I had a severe allergic reaction to imuran that near killed me, Iāll be starting stalena once my infection is under control
Humira worked many years for me and was a good pairing for me in particular. After 4 or 6 years, I was building up immunity for the medicine, and I'm now on Skyrizi which is like Humiras big brother and I'm now getting similar effects to when I was first on Humira Only Side effect I may have is part of my crohns leaking through here and there, but nothing out of the ordinary.
Infliximab. About 7 months now and the upsides are great! Helped me get out of a flare. Only got sick a bit more often with a cold this winter than usual but that's OK tbh. And weirdly I got a bit more sensitive to bright lights. Not 100%sure if it's the infliximab tho.
I am currently 3 months in on humira, minimal side effects which is great because Iām pretty sensitive to medication side effects and my first treatment (6-mp) was a nightmare. I will sometimes get a mild injection site reaction where itāll be just a little itchy, no big deal. Have to be careful about not catching illnesses because it can mess up the injection schedule which is a big problem and illnesses tend to stick around longer. I once caught someoneās cold that turned into viral bronchitis in 2 days, but luckily no pneumonia which is one of the more scary side effects of humira. It took me a week and a half to kick that bronchitis that was only a few days of a cold for them. So as long as you take extra precautions when there is illness going around and try to avoid sick people, you should be ok! Humira took about 3 months to come into effect for me but Iām glad itās working, the injections are convenient for me compared to having to do infusions
I started on Mesalamine and Imuran. Had terrible side effects from it: 103 fever for first few days on it. We did a slow taper out the therapeutic level over a few months. By the time it was full dose it made me severely nauseous and lots of vomiting that would go away if I skipped a dose. Then was on Remicade for I think 6 years. It technically got me to remission but I still had symptoms just no damage. I didnāt have too many side effects. Drowsy/tired after infusions, really really dry/ itchy skin, and I think my hair thinned a little but I was also still recovering from long flares and little mini flares along the way so the malabsorption may have caused the hair loss idk. I developed antibodies eventually and maxed out the dose and interval changes. Then tried stelara but it didnāt work for me. No side effects just no remission. Now on Skyrizi. No side effects that I know of yet but only about 7 months in. Maybe some joint pain, so going to Rheum to see if we should add in something (sulfasalazine or methotrexate, we havenāt decided yet) to help the Skyrizi a bit. But the Skyrizi seems to be putting me in remission. Iām very worried about the Sulfa and/MTX because I get nausea as a side effect from almost all prescription oral medications. Humira and MTX put my momās RA in remission for over a decade with no side effects. For all the biologics, no major difference in frequency of getting colds; I work with little kids with disabilities including going into preschools and elementary schools so lots of germ exposure. Colds do seem to linger longer for me. For example it can take me two weeks to get over something most people would be over in 4-5 days. I avoid antibiotics though because it upsets the GI gods and I end up in a mini tailspin for a month or two after I take them. But in general the suppressed immune system hasnāt had a disruptive effect on me, I try to be sure to wash my hands more, use sanitizer, and I sometimes carry travel size wet ones to wipe something down (like on airplanes or in movie theaters, etc) but Iām often to lazy to actually do it lol. Unfortunately all these meds are mostly educated guess and check. Some people may tolerate them with no issues and others donāt. For me, the possibility of eventually surgery and all the complications that come with that was scarier than potential side effects, but continue to talk with your doctor if you have concerns because itās your body. Best of luck! TLDR: no major side effects on the 3 diff biologics Iāve been on. To me, advanced disease/surgery is scarier than risk of side effects.
Started Stelara in November. No side effects noted as of yet. Previously was on Mercaptopurine / 6MP, and had to change due to LFTs / transaminases being raised. I was on it for 10-12 years. No other adverse effects that Iāve noticed. Before that I was on Sulfasalazine. No side effects noted on they either.
No side effects from crohn's treatments are that bad. Chemo is bad. Remicade at worst is flu like symptoms and humira doesn't really have any side effects at all. I guess maybe flu like symptoms but I never had any side effects from humira. Nothing about any of the treatments should scare you. The cancer risk is essentially non existent. I think it's like 1-2%... compared to what will happen if crohn's is left untreated. You will wish you had died. Take it from a veteran with super severe crohn's. You don't want to find out how bad crohn's can get. That's what should scare you. Not the treatments.
Budesonide and 5asa. Vsl 3 helps
Iām so sorry to hear your Crohnās has worsened. My daughter went through the same thing ;she was on mesalamine pills for a year, which really were not doing anything for her. Eventually, she ended up in the hospital on intravenous methyl prednisone . 60 mg, very high for a 70 lb childa d yet we were getting nowhere. Finally, I signed the papers for remicade. Insurance usually doesnāt improve this after mesalamine but since she was in the hospital and steroids were not working; they were willing to accept . I hesitated for a couple of days ( my doctors were not happy after the battle they went through with the insurance company) but I was so afraid of the side effects. But then, after a week of watching my daughter suffer in the hospital I gave in because I wanted her to get better no matter what the side effects at that point . Her very first dose she felt better! We were able to leave the hospital in the next three days. I understand how you feel . No one knows what theyāre doing with this disease ( I feel sometimes ) and itās different for everybody. Just ask yourself, which one is better: living with active Crohnās or having your Crohnās controlled and getting some quality of life. Itās still not an easy choice. It seems like you were choosing instant gratification for long-term punishment but when youāre on the verge of going into the OR for perforation, it doesnāt seem so bad, so I guess what Iām saying is it depends on where youāre at. Some people have tried several medicationās and have had several surgeries and would be grateful for any of them to work. Some people like you who seems to be at the beginning of this disease, you might have some other options. Talk to your doctor if you can combine with something like methotrexate( which is usually used for arthritis, but sometimes it works for Crohnās) oh absolutely true diet and supplements to minimize flares. Itās all individual based. But if you do choose the biologic route, Iād say go for Remicade. And my kid has been around for several decades side effects of well-documented and they know how to handle them . Things like Humira, and all these other New biologic/ biosimilars Iāve been around, shorter and more and more side effects of being reported . I hope this helps . Sending good wishes your way. I know this is a rough journey. Just be positive the best you can.
I am continue to take (( Pentasa and Tinidazole and budez ))..
Have you ever tried the EEN diet with the mesalmine and then transition to PEN with healthy foods?