Reactive Arthritis 9 Months In

bsalzetti

I'll try to summarize this the best I can...

9 months ago I was diagnosed with conjunctivitis. It was so severe that I couldn't open my eyes in the morning and my eyesight was 20/100. I saw three different doctors for it. The first two said it was caused by bacteria. The eye specialist said it was viral and it would have to run its course.

A couple months into that I started to develop pain in my right knee, right wrist and left ankle. They conjunctivitis began to clear up within a few months although my eyes still bug me to this day. Eventually the pain migrated into both knees and sometimes they were swollen in my quad and sometimes it was the actual joint.

After I informed the eye specialist about joint pain, he suspected reactive arthritis and promptly had me tested for hla-b27 which I was negative for. My primary doctor also did other autoimmune screening which everything was negative or normal... I'm healthy on paper they said. Except I do have high blood pressure which I currently take Lisinopril for.

After this it seemed to migrate into my tendons.. And some points the pain became so bad I could feel shooting pain through my entire legs if any weight were to be put on them. I would have extreme stiffness in my knees anytime I sat for any amount of time.

A month ago I was finally able to see a rheumatologist. He confirmed he thought I had ra. By the time I made it into his office the pain has effected both knees, my left ankle and tendon, my right elbow, my left wrist and fingers. He prescribed diclofinac sulfate and sulfasalozine. After reading the side effects I am terrified of both drugs and also question their effectiveness based on what I've read online.

Since seeing him the pain has spread to my pelvis (somedays,) lower and mid back as well as my neck the last two days....

I'm just looking for someone who has had a similar case or pattern. Nothing I read is this severe and the doctor treats me like I'm an idiot. I've always been extremely healthy until a year ago when this just came out of the blue. No doctor has any theory of what even caused it.

Thanks for any and all help.

stickywicket

Hello bsalzetti and welcome to the forum. I'm not a young person (though I was when first diagnosed with RA) but this forum is a fairly quiet one. Plus, you are writing of Reactive Arthritis which not many on these forums suffer from so I suspect replies might be few. At least I think you're writing of Reactive Arthritis, which is normally abbreviated to ReA. RA usually means Rheumatoid Arthritis.

Whichever you have, it's not fun though, if indeed you have ReA, it's usually self-limiting with (I believe) no permanent damage done. I think it can sometimes come back as RA though which is a different proposition.

The meds prescribed will certainly be needed if you have RA. Sometimes people experience side-effects (You should have been prescribed a stomach-protecting med to go with the diclofenac) but they often disappear with perseverance. They can sound a bit scary at first, especially if you have been healthy up to now, but the consequences of untreated RA can be every bit as bad.

As for cause - Reactive Arthritis is the aftermath of an infection. RA doesn't have a cause - it just arrives unbidden and unwelcome. If there is a family history of it you have probably inherited a predisposition towards it and if you then meet with the right (wrong?) environmental factors - though no-one knows what they are.- you can get it. past health has nothing to do with it. And, yes, it's very painful.

I don't quite understand why you are questioning the effectiveness of the meds. They work for a lot of people. I've never had sulphasalazine but I take another first resort DMARD, methotrexate, along with hydroxychloroquine, and my life has been infinitely better ever since. Strong meds for a powerful disease.

Would it help you to have a chat with our Helpline people? I guess it can all be a lot to take in at first and talking it over might help.