HUMIRA and Tendonitis: Hi, has anyone experienced... - NRAS

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HUMIRA and Tendonitis

Lisazs profile image
13 Replies

Hi, has anyone experienced tendon issues in multiple areas after stopping Humira? My rheumatologist and I took the decision to stop Humira late September last year as it did not seem to be working for me anymore with regards to joint pain. since mid December I have been having lots of tendon pain, Tendonitis and swelling in my ankles, elbows and wrists. Recently occurred to me that perhaps Humira was doing something positive for my connective tissues. Haven't had chance to ask rheumatologist yet but very interested to hear your opinions, but earlier this year when I asked why I was getting so much tendon pain she said she had no idea. I have RA and Raynaud's (diagnosed about 12 years ago) but rheumatologist did say she thinks something else is going on, but nothing else diagnosed yet.

13 Replies
Gigi71 profile image
Gigi71

I have RA for 30 years plus, first dx with lupus, have suffered a lot with tendon problems till I took Humira 9 years ago, it's been a wonder drug for me. It seems to control the inflammation together with other meds, was on Azathioprine for many years and due to small skin cancers changed to mtx, also take low dose prednisone and naproxen. Do have other problems so meds for that as well. You don't say if you have been changed to another bio med, so maybe that's another option. X

Lisazs profile image
Lisazs in reply to Gigi71

Thanks for response. I'm on MTX and Hydroxychloroquine but I've not been changed to another bio med, was being considered for Rituximab however that works better in sero-positive patients. We'd been swapping around changing from Mtx to Arava which gave me horrible side effects so got put back on mtx and I think we ended up in a position of let's see what happens, now my regular rheumatologist has retired and I'm waiting to get an appointment through for a new one. Just kind of hoping that the new one gets to the bottom of things and comes up with a treatment regime that improves things for me.

Gigi71 profile image
Gigi71 in reply to Lisazs

I was due to go on Rituxamab last year, but backed out as I felt Humira was the better drug, also I have Erosive sero-negative RA and like you was told it works better for sero-positive sufferers. It's a balance really, I also have Hasimotoes and b12 deficiency. It maybe worth when you see your new rheumatologist, they run a few more blood tests for you to rule out other possibilities. X

Lisazs profile image
Lisazs in reply to Gigi71

Coincidentally I was at GP last week and asked him to run some extra tests to make sure nothing else is going on asked him if he could check vitamin levels etc. Actually hoping something shows up - at least that way there might be a simple supplement to give me some improvement. Humira didn't seem to be giving me any problems but things went haywire last year and they were trying to get to the bottom of which of my meds was no longer working for me.

Hi Lisasz

Interestingly enough, I'm in a similar boat. I stopped humira for surgery, had some complications and now I cannot return to it until my general health has improved. I also have tendinitis which has returned with a vengeance.

They're deciding if rituxumab is worth it for me but, like you, am also seronegative, so I can't see that this is a feasible option.

In the short-term, I find ice packs really helpful for my swollen tendons. What are they doing for your pain relief and swelling? They've temporarily doubled my naproxen dose.

It sounds like we both need a new biologic and I hope we get one. Wish you well and take care.

Lisazs profile image
Lisazs in reply to

Thanks Crashdoll,

I've had a steroid injection into one elbow as there was nerve compression from the swelling (unfortunately it is just starting to wear off). Other than that I'm treating at home with painkillers and ice, bought some tennis elbow braces at the weekend but can't seem to get them quite right (must email company today for advice). Hopefully I can get in to see Rheumatologist soon if not there is a nurse helpline which is usually good (they did however advise me to stop doing whatever was causing the tendon pain...). All good fun! Take care Crashdoll hope you get your new biologic soon x

in reply to Lisazs

What about steroids? I've been prescribed 40mg to bridge me until I'm well enough to start a new biologic.

Do call the nurse helpline again, even if it is only to note that you're struggling so it's on your records.

Take care and hope you get some good news soon.

Lisazs profile image
Lisazs

Thanks. That's a good idea.

Jacey15 profile image
Jacey15

I have widespread tendonitis and enthesitis which I am hoping will improve now that I have just started taking Humira. There are reports that anti tnfs combat enthesitis so maybe when you were on Humira it was under control but it has flared up now you are off it.

Lisazs profile image
Lisazs

Interesting. In that case I'm definitely going to raise my concerns with the rheumatologist and not walk away without answers and a realistic treatment plan. Feeling better to read everyones responses as at least I feel I might be getting to the bottom of why I suddenly experienced multiple tendon issues, much better than the shrug I got from rheumatologist when I asked "why all of a sudden am I getting so many tendon problems".

JackieWho profile image
JackieWho

I'm on humira and wondered if tendonitis was a side effect, I've got a bad case in my left arm...

AlanBatka profile image
AlanBatka in reply to JackieWho

I have been on Humira for about 9 years now and lately have Ben wondering the same thing about tendinitis. Had one elbow surgically repaired going in for the other soon.

Sackface profile image
Sackface

I have psoriatic arthritis… I have a few of the “itis's.” I have found that humira has been a wonder medication for me in terms of both plaque psoriasis and psoriatic arthritis. Lately I have been dealing with tendon issues in my ankle. At first, like always, I thought I just hurt it, and I did, but the pain, stiffness, and slight swelling is still here 5 months later. I’m wondering if switching to stelara would be a good option? Although I do know that humira is most effective as a blanket for a lot of inflammatory diseases, and stelara is more aimed to deal with psoriatic arthritis and psoriasis, but it could be an option do discuss with your rheumatologist. I personally am not the boat with my meds. The humira takes care of 99% of my psoriasis, and 90% of my psoriatic arthritis. Just thought I’d add my two cents. Hope you find some relief. I know the pain of living with arthritis, and it’s beyond painful. Sending love

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