reaction to drugs: well my RA is taking its toll. Due... - NRAS

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reaction to drugs

1245toie profile image
13 Replies

well my RA is taking its toll. Due to constant allergic reactions I’m currently off all medication except anti inflammatory pain killers Naproxen. The Rheumatologist says unfortunately you have a rare form of arthritis having inflammatory osteoarthritis & RA. I am truly suffering at the moment and the British wet cold weather isn’t helping. I have a telephone appointment with Rheumatologist April but I’m not hopeful any other suggested drugs will NOT react. It seems my immune systems attacks them all? Anyone else have these problems?

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1245toie
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13 Replies
J1707- profile image
J1707-

yes I’m having the same problem. I can tolerate a low dose of MTX . I’m allergic to ibuprofen and naproxen so rely on steroid injections. I’m due an appointment soon with a new rheumatologist so let’s see what happens then

Amnesiac3637 profile image
Amnesiac3637

Really sorry to hear of your problems and hope somebody comes with some sort of answers soon. It’s utterly miserable and depressing when your body just rejects the drugs and you have to move on to the next, only to discover that they give you grief too.

I haven’t had allergic reactions to drugs but haven’t had much luck with most of them over 34 years of RA and OA and have had to ditch each offering after a short time so can commiserate, which isn’t much help but sending you best wishes anyway and fingers crossed for a solution.

1245toie profile image
1245toie in reply to Amnesiac3637

Thanks so much! The depression & fatigue is so debilitating. I’ve been put on some great drugs which did make feel hugely better until my immune system started to rebel.1 drug gave me asthma! And that’s how it’s been the last one which cost NHS £800+ monthly made me dizzy and pass out. Absolute nightmare! But I’ll keep trying others!

welsh12 profile image
welsh12 in reply to 1245toie

Which drug gave you asthma

1245toie profile image
1245toie in reply to welsh12

Can’t remember the name as it was 10 years ago!

OldTed60 profile image
OldTed60 in reply to 1245toie

I’ve had many adverse reactions to drugs over the years. Thankfully they chased the RA-type fare into permanent remission and my OA is mainly in my spine and isn’t inflammatory. It turns out I have seronegative Sjögren’s and seropositive systemic sclerosis and the immunesupressant I take for these gives me no side effects and has been my life saving game changer medication. But sadly it won’t help for inflammatory arthritis - more for organ involvement and systemic issues related to Sjögren’s and skin tighteninging of scleroderma. After two rounds of infusions of immunoglobulins in 2022 gave me severe Stevens Johnson Syndrome, I learnt from my rheumatologist that people like us often have a condition called Mast Cell Activation Syndrome/ disorder/ MCAS. It maybe worth enquiring about this for you because a maintenance dose of antihistamine or even cortosteroids can be helpful in preventing further serious drug reactions.

Sheila_G profile image
Sheila_G

So sorry to hear this. Life is difficult enough with RA without having added problems. I really feel for you but can't offer any advice I'm afraid. I hope you find something that is right for you. x

Deeb1764 profile image
Deeb1764

I had lots of adverse reactions the only one that has worked and I can tolerate is Baritcitnib. It’s a long journey for some just keep battling and pursuing the medication and don’t be fobbed off with we can’t do anything either.

1245toie profile image
1245toie in reply to Deeb1764

Thanks I will keep on trying. I know the previous drug FILOGOTINIB which caused sickness dizziness a fainting is now out of my system as the tell tale nodule is getting bigger on my elbow. RA way of saying ‘“I’m still here”

Deeb1764 profile image
Deeb1764 in reply to 1245toie

I know I have been in a horrendous fibro flare but RA peaks above the parapet to let me know I’m still here too

Blackberrywine profile image
Blackberrywine

Sadly yes I'm in the same boat. I'm very sorry to hear you are suffering. I don't take anything at all now, although I am allowed a steroid shot if I get a flare. Fortunately at the moment I'm not too bad. I think sometimes having an autoimmune condition can just trigger all sorts of allergies in some people. I've developed food allergies and hay fever too!

I hope things improve for you soon.

fred42 profile image
fred42 in reply to Blackberrywine

I too seem to have major side effects from many drugs including all the Dmards. Eventually I tried Cymzia which has worked really well for over 2 years without discernable side effects.You need a good rheumatologist and a bit of luck, don't give up.

Blackberrywine profile image
Blackberrywine in reply to fred42

Thank you. Very glad you've found something that works. 😊

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