Hey everyone,
My rheumy decided to put me on Humira. I've taken mtx, leflunomide and sulfasalzine for my RA, but none of them has worked for me. I've experienced mild side effects from all of them, excepting 20 mg of mtx which gave me bruises all over my legs (was put off it 2 months later).
I am a bit nervous Humira's side effects.
Can you share your experience with Humira and its side effects?
Thank you
Unfortunately a lot on here went through what you are going through now, & most of us really did eventually find a selection of prescription drugs that suit us……so please don’t give up.
As you are finding - getting the right combination of drugs to control RA is difficult enough…..without concentrating on side effects other people have. Try to approach Humira with the attitude it will work, not looking for every nasty side effect other people have had. Read about them if you must, but don’t go looking for them in yourself.
Good Luck…hope H is the drug you are looking for.
I know I shouldn't be focusing on the side effects, as everyone responds differently to treatment, but I want to know what to expect. I must admit that reading about people who were diagnosed with cancers or other serious illnesses or even died months after starting biologics really makes anxious. Hope Humira will work wonders for me without the side effects..
God bless you!
Beware….if you know what might happen…you can think yourself into it!
I have been on Rituximab for 6 years. The first time I read a description of it….it said under worst side effects…can cause death! I started infusions & I’m still here….doing well.
On the other hand, I gaily went off for a Mammogram with no pain,lumps or bumps & Hey Prest I had cancer.
So the only way for me is to accept it might be a long haul, but to expect a drug to work, with no negative thoughts. Has worked so far.
Totally agree AC, looking for side effects, especially before you even start a med, will have you constantly thinking every little thing is a side effect. I always avoid seeking out possible side effects and only check if I have persistent changes. Everything seems scary if you research enough.
At the beginning of my RA journey, I spent three months vomiting every day on a drug ….blaming everything except the drug.No it wasn’t Mtx…it was a drug that is constantly praised here as being easy to take.
I knew nothing of NRAS back then….but ignorance got me through.
A very sympathetic rheumatologist told me never to suffer for so long again…but I think it at least showed him I would stick it out……
Me too but I had 5 days of sickness and two good days on top dose, didn’t cross my mind that I should stop and thought it’d get better the longer I was on it but eventually had to lower the dose. No forums so you just got on with it because that’s what you were told and you wanted it to work.
Yes I was exactly the same when starting Methotrexate. No Biologics back then so just put up with sickness every week. I spent the following morning sitting on the bathroom floor as it wasn’t worth moving. But my body got used to it over time & things improved. I was on it for 15 years & it worked very well for me. X
Cosana, expect humira to be the drug that gets you your life back 😊 Did you feel like this before starting mtx as that had some horror stories too?
Yessss, definitely yes! Mtx wasn't as scary as I expected it to be. But my experience with MTX wasn't that pleasant. It gave me nausea (even now, just thinking of it makes me sick). When doc recommended increasing concentration, it also caused a lot of unexplainable bruising on my legs - that's when rheumy decided to switch to leflunomide.
Still, I want to keep positive about Humira😀
Thank you for this! I will start Humira next week and I’m so excited about it. I’ve had a long road to finally get here. I will not read the negative and will only focus on the positive outcome that I hope to get. BTW, I am 66 years old and have been fighting this for many years
Well this old dear is nearly 20 years older than you & a long time ago I decided after reading a bad review of something I was about to try- I would ignore it…. …but if was a good review…I’d decide it would suit me fine!
I’m still here doing fine….all you can do is be positive & optimistic.
Exactly! Thank you for your message. I’ll let you know how it goes if you like. Take care.
I hope it will work for you. Unfortunately, I was on it only 3 months because rheumy expected it to give better results. Tbh, I felt great on it, the first week my swelling subsided greatly and pain disappeared almoet completely. My labs had never looked so good, also. All inflammation markers decreased a lot. I had no side effects and the shot was not painful. Now I am on Benepali, Mtx and sulfa. I wish you all the best
I had a mild reaction at the injection site but otherwise didn't know I was on it. I also felt benefits almost immediately.
That's encouraging. I'm glad it works well for you. How long have you been on Humira?
I took it for 9 months. It worked really well on my peripheral joints but I have axial spondyloarthritis and they stopped it because I had active inflammation in my spine. But I was switched to Cosentyx, which has been good. I now also take a low dose of methotrexate with it, which is meant to stop you building up immunity to the biologic. My first biologic, etanercept, also only worked for about 9 months but it wasn't as good anyway.
I started Humira in 2005, it transformed my life. I have had no adverse side effects. I was switched a few years ago to Amgevita, a biosimilar for Humira and that had been just as good and also no side effects. Originally I was taking Humira with 20mg of methotrexate but I have been able to reduce that to 10mg. Humira was very new onto the market when I started on it. There was very little information on side effects and the the warnings were basically we don't know what will happen! As time has gone on they have much more knowledge about side effects so more will be listed, look at the warnings for paracetamol if you want to really scare yourself into not taking a medication! My reality is my life is infinitely better and I have not been any more susceptible to infections.
I was on humira for several years with no problems. Then I suddenly experienced weeping welts on my legs. I was told it wasn't a side effect. Later found out it is! Came off it and welts went away. I believe it was my body saying I didn't need it any more. The few years I was on it were fine.
I have been injecting Humira for years I don’t tolerate meds well. I have never thought about side effects and just inject. I can put up with some side effects( providing it’s not to serious) as the pain from RA is much worse. Humira put me in remission and I was able to stop my other meds. Good luck I hope it works well for you!
I was on Humira for 12 years. It worked very well indeed. In fact gave me my life back. No side effects I was aware of but after 12 years I developed pustular psoriasis which they thought may be caused by Humira. They wanted to stop it but as it worked so well for me I begged my Consultant not to stop it. He agreed & stopped Methotrexate instead & it cleared up. Humira did eventually stop being effective so had to change to Rituximab. Hope it works well for you too x
I think most of the drugs used to treat RA (biologic and non biologic DMARD's) can give psoriasis as a side effect. I know a couple of people who developed psoriasis from leflunomide.It's so frustrating to know that the treatments meant to end our pain and suffering can add more to it!
I hope Rituximab works well for you now.
God bless you
I had this for 11 years it was great no issues at all. Had to change as it slowly stopped being effective after a bout of shingles. Best of luck 🌺
I took it for 7 years and it was brilliant, I could forget that I had RA. Go into it with an open mind; I hope that it will help you as it helped me.
what are your symptoms and bloodwork numbers? Is your crp really elevated?
Along the years, my bloodwork hasn't shown much inflammation , even though it has been increasing. I am anti CCP positive (last time I checked anti CCP levels they were >1000), RF positive - around 36, ESR 35, CRP 23 (was tested for these markers a couple of days ago). In the last years, I've started to think that I don't have RA, but another inflammatory condition. My PIP joints are extremely swollen, but not as painful as they look. I also have inflammation and pain (not severe) in shoulders, chest, jaw, neck, feet, fingers, wrists, right hip - the wrists and right hip are the most painful. Inflammation hasn't subsided with DMARD's, only when taking pred. Another thing which is curious to me, but never explained by doctors, is that swollen joints with inflammation don't have doppler signal. And all these years, with almost permanent inflammation and swelling, erosions haven't been seen on xray or us.
But all docs I've been to didn't seem to bother and took the ra diagnosis for granted.
LE: Much of the pain I have is in the muscles, tendons, less in the joints.
Like you tried mtx sulfazalazone etc with limited effect on the RA and some side affects, nausea, mouth ulsers. Humira was and is fantastic for me. Within 4 weeks totally pain free and no side affects. Taken humira for over 5 years now. Hope you have a similar experience.
I do hope you can find some help very soon. My rheumatologist has decided to add Sulfasalazine (2000 mg per day) to help my other drugs work better. Am on Tocilizumab weekly injections plus Hydroxychloroquine (200 mg/day. Would be able to tell me any side effects you noticed after taking Sulfasalazine? I couldn’t tolerate Methotrexate. Have had several biologics but my RA has become rather debilitating and am losing my mobility and independence. Very scary. Best wishes.
I am sorry to hear that.For me, sulfasalazine has been one of the meds that had no side effects, but unfortunately, had little effect on inflammation and pain. I used to take sulfasalazine (2000 mg a day) with leflunomide (20 mg). MTX was the worst.
From what I know, sulfasalazine is the least aggresive DMARD, so you shouldn't have problems with side effects while taking it.
Thank you for replying. The idea of adding Sulfasalazine was to help decrease both inflammation and pain…. So if that wasn’t the case for you it might be the same for me, although we’re all different and react in different ways to drugs. Also the tablets are so big I simply won’t be able to swallow them… was not informed about their size before they were prescribed and I received them. I have problems swallowing small tablets nowadays… that would not help.
Regarding tablets' size, don't worry, you'll get used to it. I've always had problems swallowing any kind of tablets, regardless of size, but it got better in time. Just as other folks here told me to give Humira a chance, I suggest you to be optimistic about sulfasalazine. Maybe it will work wonders for you and also have no side effects 😊
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