Reactive arthritis converting to Inflammatory arthritis
Hi all,
Wanted to plug in into the community, and introduce myself.
I was diagnosed with Reactive arthritis last year which is turned into an inflammatory arthritis and have been trying to cope up with it.
I live in London Uk, and I am 34 years old, and I am struggling to figure out how my life will turn up with this chronic condition. I have been feeling very **** about my life with low energies and poor fitness overall which has affected my life overall.
Happy to hear from everyone their lessons learnt and advices in geberal
Comments
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What was the basis of the reactive arthritis diagnosis? Was it a drug?
How has it “turned into inflammatory arthritis”? Please can you give further detail.
Usually with reactive when you stop the trigger substance the problem goes away.
You can PM me if you’d like a rheumy recommendation for a newly diagnosed RA patient.
Which blood tests have you had & results?
RF, ACCP, CRP, ESR & eosinophils?
Medications?
I was on full on inflammatory RA, confirmed with blood tests & imaging and on MTX max dose for 15 months, it was horrible. I then managed to escape… felt like the Great escape, spent 2 years free, no symptoms, no RA drugs hospital did bloods and imaging scans, all amazed … but not interested any further and marked me as “standby/dormant”. Until Jan 2025, when something triggered mine and I am back in the RA club trying to escape again.
Here’s something to listen to from Zoe, where a rheumy talks about the latest progress in rheumatoid arthritis
Listen to it and do come back with your thoughts.
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Hi there @yaksh91 welcome to the online community
To be diagnosed at a young age with any form of arthritis is such a shock and takes a lot of rethinking and some changes in behaviour to help to readjust to the new situation. So we are glad you found us and hope that we can offer you information and support to help you on your journey.
Thanks to @Arthuritis you have had a response from one of our members who has had similar experiences and I hope there will be others who can also offer you their tips and ways of coping.
Struggling with low spirits and fatigue is a recurring concern for many of us with inflammatory arthritis and I attach some links which I hope you will find helpful
The Young Peoples Community has an active online group and in some areas some face to face meetings so you may feel able in the future to make contact .
Do let us know how you are getting on once you have had a chance to read some of the above , sorry I hope I have not overloaded you !
Take Care
Poppyjane
If it would be helpful to talk to someone ring the Helpline 0800 5200 520
Monday - Friday 9.00a.m. - 6.00p.m.
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Hi @yaksh91 im in the exact same situation as you!
I had reactive arthritis through food poisoning which has turned into me being in agony where I couldn’t move for a few months! I’m on sulphasalazine now and I had a steroid job about 4 months ago.
be good to chat to you and see if we could help eachother1 -
Definitely ! I'll drop you a message on your profile and we can take it from there
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Sorry, i missed this comment earlier. This reactive arthritis got triggered from Chicken pox that i got while travelling to Middle East. I had never had Chicken pox as a Kid and this led to inflammation and arthritis trigger in my body.
Not sure how/why it got converted into other one. Doctors kept saying that this happens more often than not as the immune system gets disturbed. As per them there is no difference in treatment of Reactive arthritis / Inflammatory arthritis and Rheumatoid Arthritis.
I am now taking in Methotrexate, Hydroxychloroquine since past 15months, but the diseases seams to continue progresing. Rhuematologists did mention that i am in remission, and my CRP levels remain between 4-10 (range is between 0-5) but i keep getting some or the other symptoms every few weeks. I have had trouble with my spine/back, wrists, fingers, knees, eyes and have had neuropathy symptoms due to Bilateral Carpal tunnel syndrome.
It has disturbed me a lot, but it doesn't bother Rhuematologists much and they have asked me to continue existing medication.
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15 months is a long time, MTX usually takes 3 months to show its effects, what is the dose you are taking? You might need your dose adjusted or switched to a different medication like a biologic. Rituximab often works when MTX fails.
Look at your diet, RA makes you sensitive to foods that you were not sensitive to before, and these foods trigger symptoms & flares. There is no standard list, it comes down to what your immune system will tolerate. In my case I did a week long water fast to clear everything, and when I noted the symptoms subsided, I resumed food one simple item at a time, no processed food with their long list of ingredients. Found I had become exceptionally sensitive to soya proteins, even eggs as the chickens are fed soya. You get the drift.
It’s too late now for you, but if you know anyone who has not had chickenpox do please advise them that there is a very effective vaccine for it that you can get at Boots.
CRP alone does not tell you much. See if you can access the FBC results, and your ACCP & RF results.
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as per doctors, MTX is being effective, coz i dont get a major flare up, but keep getting minor effects. My dose was increased from 10 mg to 15mg to now 17.5mg in past year. I started with 10mg in July 2024, and things stabilized, but started having back pains in November last year, and that is when they moved me from 10mg to 15mg. Then in March-May after i again started having Neuropathy symptoms, for which we had nerve conduction studies and identified Carpel tunnel. Moved to 15mg then, but i still have pains in fingers and doing physiotherapy for it. I am also now having pain in my knees if i am not moving a lot. Also since past 2 months i am also having burning sensation in my eyes and always have my forehead burning (specially in the morning).
NHS doctors so far have been very dismissive of my latest symptoms and dont really explain some of these symptoms. They make me feel that i am overthinking too much and hence i am hallucinating pains which ofcourse is not true. Hence i need to find people other than doctors who can help me and guide me what i should do.
Regarding food, i am trying to identify and find the triggers. i have so far been able to identify foods that help. While i know pizza is definitely not good, but have not been able to identify others. But more or less, i dont get a major flare up with just 1 meal
Regarding tests- I am negative on RF factor and ACCP was also not very conclusive. When this all started, i was having high ESR and high CRP (but not crazy high) and physical symptoms, for which they titled my disease as "Seronegative RA".
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