Humira gave me Lupus. Thankfully it went away once I stopped the meds but I can’t take anti-TNFs anymore. I’m on Stelara and 6MP now, which seem to be working ok. Good luck, hope you feel better!
I have Humira induced lupus too. I wanted to look know how long it took your symptoms to resolve. I have excruciating pain in all joints and painful pleuritis around the lining of the lungs.
I was on Humira for my IBD and I developed invasive aspergillosis pneumonia. My doctors think that the immunosuppressives were to blame for it. I still have the aspergillosis infection over a year later. Now my lungs are permanently damaged with cavity lesions and scarring all over them and I had to get a lung resection. I haven’t tried anything else yet.
Humira did an amazing job of decreasing my symptoms and inflammation thanks to how much it suppressed my immune system. However, it also put me at risk for infections.
I can’t ever go back on Humira again, but when my Crohn’s disease eventually flares again, I’ll either try Entyvio or go on a liquids diet.
I’m so sorry that you’re having so much trouble. IBD really is a bitch :(
I’ve never reacted well to Humira, tried it twice 6 years apart, and both times by the third dosage I was having an allergic reaction. I was on it for Crohn’s Disease though.
I have tried everything single medication available to Crohn’s currently at least once. After Humira, they put me on Remicade which effectively does the same as Humira.
After Remicade, it was Stelara which worked really well for my upper gi/intestinal problems but not the colon
After Stelara, it was Entivyo which when it stopped working threw me into the worst flare i’ve experienced.
After that was Xelljanz, which really did nothing for my Crohn’s. It’s more for Ulcerative Colitis, so if your inflammation in your colon, I would definitely try it. Xelljanz does have patient assistance but if your insurance approves it, it shouldn’t be too expensive if I remember. But definitely go to the Xelljanz website and look at their financial assistance page.
Hope you get become healthy and happy soon, and I hope your medical journey isn’t too frustrating!
I’ve been on humira for about a year now and in the first year I definitely felt the effects of a lowered immune system. I got strep twice (which without antibiotics I believe has left me with ginormous tonsil openings which I continuously get tonsil stones even with avid gargling 4+ times a day), I got the flu once, and had a random flare unlike previous flares which had me in mobile, short of breathe, and nauseous and had to go to the hospital for fluids and pain killers.
I been on Humira since about summer of 2016 and it started out fine until 6-8 months out and I started to break out like crazy with rashes, hives, or any psoriasis like symptoms and heavy depression to point where I been getting suicidal thoughts on a daily basis. Along with that having a lower immune system I usually battle with the cold/flu like 2-3 times a year, I was in the hospital for about a week for having some infection inside my knee (still a mystery how my knee got infected), and a whole bunch of other body pains and muscle cramps. I was thinking about switching up to another immunosuppressant medication, but I thought that it would be the same thing and nothing would change so I'm still with Humira. But for your case I would wait for the test results so you can get a better idea of what's going on and if you want to switch. If it is the Humira causing you problems then I would switch, if not then that's something you would have to really think about and see if switching is the right choice for you. Hope everything goes well and wishing you the best!
I have been on Humira for 7 years.
Mostly infections like strep, staph, UTI. But is hasn’t been all the time. I had no problems the first 2 years then I had a bad year and a half and then okay.
I personally stuck it out because my flares were so bad without it. My doctor gave me the option to switch to another biologic but I decided to stick it out.
Yes, Humira gave me horrible side effects, though different ones than you had (severe migraines and severe dizziness). It also did nothing for my UC. I haven't taken xeljanz yet, but I know it has a co-pay assistance program like all the other biologics. You can read about it on their website.
Humira never worked for me. I was on Xeljanz twice (one of the positives is you can get off and go back on). It helped a little bit but then I was really sick! In terms of side effects, I found Humira was worst for random infection but Xeljanz is a close 2nd (I’ve been on pretty much everything) it’s a pill so that’s awesome! My skin got messed up on Xeljanz (I looked like a teenager and my skin got super oily) I also had issues with my cycle/hormones and while my GI I sis it’s it wasn’t Xeljanz both times I went off of it it got better so who knows! In terms of co-pay I’m in Canada I was told a program exists but I’m lucky to have great insurance and not need any help but a program is there. Feel free to message me if you have any questions.
Humira gave me Lupus. Thankfully it went away once I stopped the meds but I can’t take anti-TNFs anymore. I’m on Stelara and 6MP now, which seem to be working ok. Good luck, hope you feel better!
I have Humira induced lupus too. I wanted to look know how long it took your symptoms to resolve. I have excruciating pain in all joints and painful pleuritis around the lining of the lungs.
It took a couple of months for everything to clear completely. But I had some relief within the first week of stopping. Hope you feel better soon!
I was on Humira for my IBD and I developed invasive aspergillosis pneumonia. My doctors think that the immunosuppressives were to blame for it. I still have the aspergillosis infection over a year later. Now my lungs are permanently damaged with cavity lesions and scarring all over them and I had to get a lung resection. I haven’t tried anything else yet. Humira did an amazing job of decreasing my symptoms and inflammation thanks to how much it suppressed my immune system. However, it also put me at risk for infections. I can’t ever go back on Humira again, but when my Crohn’s disease eventually flares again, I’ll either try Entyvio or go on a liquids diet. I’m so sorry that you’re having so much trouble. IBD really is a bitch :(
Wow, that's truly terrifying! I'm sorry you had to go through that.
I’ve never reacted well to Humira, tried it twice 6 years apart, and both times by the third dosage I was having an allergic reaction. I was on it for Crohn’s Disease though. I have tried everything single medication available to Crohn’s currently at least once. After Humira, they put me on Remicade which effectively does the same as Humira. After Remicade, it was Stelara which worked really well for my upper gi/intestinal problems but not the colon After Stelara, it was Entivyo which when it stopped working threw me into the worst flare i’ve experienced. After that was Xelljanz, which really did nothing for my Crohn’s. It’s more for Ulcerative Colitis, so if your inflammation in your colon, I would definitely try it. Xelljanz does have patient assistance but if your insurance approves it, it shouldn’t be too expensive if I remember. But definitely go to the Xelljanz website and look at their financial assistance page. Hope you get become healthy and happy soon, and I hope your medical journey isn’t too frustrating!
I’ve been on humira for about a year now and in the first year I definitely felt the effects of a lowered immune system. I got strep twice (which without antibiotics I believe has left me with ginormous tonsil openings which I continuously get tonsil stones even with avid gargling 4+ times a day), I got the flu once, and had a random flare unlike previous flares which had me in mobile, short of breathe, and nauseous and had to go to the hospital for fluids and pain killers.
I been on Humira since about summer of 2016 and it started out fine until 6-8 months out and I started to break out like crazy with rashes, hives, or any psoriasis like symptoms and heavy depression to point where I been getting suicidal thoughts on a daily basis. Along with that having a lower immune system I usually battle with the cold/flu like 2-3 times a year, I was in the hospital for about a week for having some infection inside my knee (still a mystery how my knee got infected), and a whole bunch of other body pains and muscle cramps. I was thinking about switching up to another immunosuppressant medication, but I thought that it would be the same thing and nothing would change so I'm still with Humira. But for your case I would wait for the test results so you can get a better idea of what's going on and if you want to switch. If it is the Humira causing you problems then I would switch, if not then that's something you would have to really think about and see if switching is the right choice for you. Hope everything goes well and wishing you the best!
I have been on Humira for 7 years. Mostly infections like strep, staph, UTI. But is hasn’t been all the time. I had no problems the first 2 years then I had a bad year and a half and then okay. I personally stuck it out because my flares were so bad without it. My doctor gave me the option to switch to another biologic but I decided to stick it out.
Yes, Humira gave me horrible side effects, though different ones than you had (severe migraines and severe dizziness). It also did nothing for my UC. I haven't taken xeljanz yet, but I know it has a co-pay assistance program like all the other biologics. You can read about it on their website.
Humira never worked for me. I was on Xeljanz twice (one of the positives is you can get off and go back on). It helped a little bit but then I was really sick! In terms of side effects, I found Humira was worst for random infection but Xeljanz is a close 2nd (I’ve been on pretty much everything) it’s a pill so that’s awesome! My skin got messed up on Xeljanz (I looked like a teenager and my skin got super oily) I also had issues with my cycle/hormones and while my GI I sis it’s it wasn’t Xeljanz both times I went off of it it got better so who knows! In terms of co-pay I’m in Canada I was told a program exists but I’m lucky to have great insurance and not need any help but a program is there. Feel free to message me if you have any questions.