Severe allergies with inflammatory arthritis

Treaksy

Hi there, I am struggling with allergies to medication for arthritis. My new onset seronegative inflammatory arthritis started during my front line service for the NHS during 2020. Delays due to the pandemic meant I didn’t start medication until 2022 having been medically retired at the end of 2021. I trialled sulfasalazine and methotrexate both causing burning red rashes and they also did next to nothing therapeutically. I have always had multi allergies to environment, food and drugs in the past but not severe enough to need hospital treatment and I do not get anaphylaxis. I have also be very healthy up to now and very rarely get ill. I was meant to have allergy and skin testing but due to HNS pressures never did. As I was getting very unwell Rheumatology decided to trial me on a biological drug Adalimumab in March of this year. It’s therapeutic effect was superb and just mind blowing, I could feel the effect by the end of the 1st week. The issue was I started to get a few spots in week 1 and as the weeks went by things get worse. As you rarely get to see the Rheumatology team I was sending the nurse help line update emails. I carried on until the 3rd injection (week 5) when it all went horribly wrong and I had a severe allergic reaction to adalimumab. It caused Paradox Psoriasis so now I have psoriasis that I did not have before. It has also injured my circulatory system and my blood pressure is horrifically high, fast pulse and my clotting factors have been damaged so I keep bleeding when I cut myself. I was in hospital for 10 days in May during the initial stages.

I am slowly recovering but am concerned that I do not have any appointments for allergy testing or skin testing yet. I would have thought after such a severe injury that a patient would be fast tracked through this process, but there seems little interest. I am now starting to get really sore and the savage joint pain is rapidly returning as I have been unmedicated since the reaction.

Has anyone had experience of severe allergies, and what was done to help control your symptoms? Was allergy testing of value or is it not necessary? Do your Doctors just keep trying you on different drugs looking for one that you don’t react to? It is all confusing and frightening. I was so ill, lost my independence, was housebound and life was very miserable. I really don’t want to be in that position again. There is so little information out there about severe drug allergies, and what there is is a bit negative. Any advice on what I should try and get my Rheumatology and now Dermatology teams to do would be very gratefully received.

Many thanks :)

Ellen

Hi @Treaksy

I understand from reading your post that you have had a severe allergic reaction to Adalimumab exremely disappointing as it was helping really well with your Arthritis.

I wondered whether this might interest you:

https://community.versusarthritis.org/discussion/comment/709876#Comment_709876

Noting @silverfoxxxx 's reaction to medication.

I also Did this search for you:

https://community.versusarthritis.org/search?query=allergies&scope=site&source=community

I would have thought Dermatology would be the way forward for allergy testing. At least a discussion about the subject.

Please do let us know how you get on.

Best wishes

Ellen.

noddingtonpete

Hello @Treaksy some years ago I had an allergic reaction to something (never found out what) which caused reactive arthritis. My treatment was a massive dose of steroids to initially get it under control and lots of antihistamine and pain killers. We never did the tests to discover what caused it as the doctor said they could run loads of tests and never find it.

However in your case you know what causes it so I would have thought that the consultant could look at the drugs and try and map out a way forward for you, maybe other drugs to counteract the allergy? Keep pestering and hopefully they will get you sorted soon.

Best wishes

Peter

Treaksy

Thanks for the ideas Ellen and Peter, I think our bodies are very strange things and there is so much medicine does not understand. I guess my anxiety is that it seems to be all drugs I am given cause rashes and obviously the much worse side effects I listed above. Maybe very few people have multi drug allergies, it does seem strange that there is little info out here for those who are super allergic!