Reactive arthritis

[N130513]

Hello everyone,

About 2 months ago I was diagnosed with reactive arthritis after I had tonsillitis. My symptoms were both knees swollen and extremely painful, elbows sore and hips were sore. These were all improving, but recently my knees have been feeling weak and painful.

I was wondering if anyone had experienced the same or similar?

[PFKAAde]

Hi Nicole

Was it a rheumatologist that diagnosed reactive arthritis? What medication are you taking for it (if any)?

I had a flu-like illness which was far worse than anything I had experienced before that (literally in bed for 2 weeks and still not right). After about 3 months I was still quite poorly and (long story short) eventually developed painful and swollen joints over most of my body, along with severe fatigue, chiills, nightsweats etc.

I was diagnosed with reactive arthritis and put on prednisolone and diclofenac.

This helped for a time but when I came off them it came back again. Eventually I was told it was 'becoming chronic' and put on methotrexate. This all started in 1999.

I have now been diagnosed with seronegative RA, although even the rheumatologist said that he wasn't certain that it was actually RA, but I needed biologics and at the time biologics were only available for RA and I had tried pretty much every other treatment option with no success.

I was told that reactive arthritis can happen in 'waves', with the severity decreasing over time. Didn't quite work out that way for me, but it could well do for you.

All the best.

[N130513 in reply to PFKAAde]

Hi, thank you for your reply.

I'm not too sure, I don't believe it was as I was in hospital, I think it may have just been a doctor.

I'm not taking any medication, apart from ibuprofen and naproxen.

Your symptoms sound very similar too mine. I'm sorry to hear that it has been going on for so long.

I'm having a blood test next week to see if it is anything more serious than reactive arthritis, which hopefully it isn't.

The 'waves' theory makes sense and might be what is happening.

Thank you again,

[PFKAAde in reply to N130513]

No worries, it's a permanent thing for me now but I have been 'in remission' for the last 8 years or so, so things could be worse.

I'm not saying it is RA by the way, but one of the things I often wonder is what difference it would have made had I been diagnosed sooner and given stronger meds sooner. One of the things they go on about with RA is early treatment being very important so if I were you I would be pushing for an appointment with a rheumatologist (if you haven't got one already).

They are also the best people to deal with reactive arthritis as GPs often aren't that knowledgeable.

If the blood test you are having is Rheumatoid factor then I have always tested negative for it. Some people test positive and don't go on to get RA and some test negative and have RA. There is a newer test that is a bit more accurate called anti-CCP. Again it isn't a test that shows you definitely have something, it just goes together with other factors to help them decide on a diagnosis.

I don't know what percentage of people diagnosed with reactive arthritis go on to have a chronic form of it, but if you were unlucky and it keeps coming back for a while, it would definitely help to already be being seen at a rheumatology department. Depending on where you are it can take some time from being referred to getting an appointment (despite the early treatment being important bit 😡).

Good luck.