Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and muscles... The symptoms that distinguish rheumatoid arthritis from other forms of arthritis are inflammation and soft-tissue swelling of many joints at the same time (polyarthritis). The joints are usually affected initially asymmetrically and then in a symmetrical fashion as the disease progresses. The pain generally improves with use of the affected joints, and there is...

1 Online
1 Online

Episodic inflammatory arthritis.

I haven't been given a diagnosis of RA, but my doctors have called it inflammatory polyarthritis that looks like Psoriatic Arthritis (but I have no skin involvement).

I'm now in my early 20s and my joints have been a problem, on and off since I was about 8, when I was diagnosed with synovitis in my wrist. It lasted about 8 months then resolved. Then nothing until I was 11-13, I got the same diagnosis but this time in my ankles. I was given steroid injections and it went away. I was treated by a musculo-skeletal specialist.

Then everything was fine (joint wise), although I had a lot of fatigue and it took me years to get over Mono/Glandular Fever. When I was 20, my joint problems came back and I've had problems with my knees, hips, sacroiliac joints, shoulders, wrists and fingers. As well as Raynaud's, urticaria, dry eyes/mouth etc. This time they've treated me with Plaquenil (been on it 8 months now), NSAIDs and Prednisone for when I need it (haven't used it in about 4-5 months).

Over the past month or so, I've been doing pretty good. My GP said that she could feel some spongyness in my fingers about a month ago, but in the last week especially I've been feeling pretty good. I can kneel and even jogged yesterday. And I'm more stressed than I've been in years, plus I have a sinus infection, but I still feel great.

My rheumatologist is hopeless, I'm lucky if I see her once every 4-5 months and when I do, she does very little. My GP is amazing, but not a huge expert in this area. I would discuss this with them, but I would probably get an answer that made no sense. Also my blood tests don't show any signs of anything (except a low positive ANA).

I'm hoping that this is just one of those episodes like I had when I was younger! I'm wondering if anyone else out there has heard of/experienced these kinds of flare ups for a few months-years and then long periods of remission? Or does it just sound like I'm on the right combination of medications?

Thanks

Replies

mamawjo
mamawjo

Wabby,
I think I've heard of something called Palindromic Rheumatism. Don't know if this is what you've experienced, but for your sake, I hope you remain feeling good.
deleted_user
deleted_user

Thanks mamawjo, I have heard of Palindromic Rheumatism, but I don't know how long the flares last. I've read days-weeks. Thanks, me too!
trinaunz
trinaunz

wabby - i started out with palindromic rheumatism in 1999 and my flares would happen every few weeks, focus on a different joint and last no longer than 48 hours.

then, i had my son in march of 2001. during my pg and while i was nursing, i experienced no PR symptoms whatsoever. but...after i stopped nursing in 2002, i started experiencing consistent pain, symptoms mirrored in symmetrical joints, morning stiffness and deformities - in a nutshell, the PR morphed into RA.

that "version" of RA was manageable until i had my twin daughters in 2006 and went into an incomplete remission during pg and nursing. Since emerging from that remission in 2007, my RA has been active, aggressive and difficult to manage even on biologics. FWIW, my blood tests look fine except for an elevated white count. The pain, though, is intense and I can see the changes in my joints.

my recommendation to you is to find an excellent rheumatologist now before you know you need one. you may never need more aggressive treatment, but what if you do? find another specialist who can treat you promptly and competently when you need it. if your disease progresses, morphs into something else or gets more complicated in any way, your GP won't be able to treat you effectively. that way, you can be ready no matter what happens. best of luck to you!
deleted_user
deleted_user

Thanks so much

Is that typical that the flares in Palindromic Rheumatism only last a few days? If that's the case, then it's probably not what's going on for me.

That's interesting that your blood tests have been fairly normal. My doctors rely so heavily on them.

All the rheumatologists in my city work in the same office so it's really like going to the same doctor, just some have a better attitude than others. I'm also planning to move cities in the next 12 months, so there's not really much point. I'm confident that if things get worse, my doctors will get on to it quickly. I am happy with where things are at the moment, especially because I'm feeling pretty good.

Thanks again.
Angelpuss
Angelpuss

Wabby, I found this description of Palindromic Rheumatism and Rheumatoid Arthritis which, I thought, explains the difference well.

How is Palindromic Rheumatism different from regular Rheumatoid Arthritis?
The most significant difference between Rheumatoid Arthritis and Palindromic Rheumatism is that PR does not usually cause any permanent damage to joints. In part, Palindromic Rheumatism is diagnosed by the absence of radiographic changes (X-rays often give evidence of RA, at least once it is well established.) And unlike RA, PR is an equal opportunity offender: it attacks both genders equally.
Cheers
Angel
bcatz
bcatz

Wabby, what is your anti-ccp tests results. That is sooo RA specific. It's gold standard. I have not read that it can indicate PR. Might check on that.
bcatz
bcatz

Well, I found my own answer. PR is suspected as a form of RA and 55% PR patients test + on anti-ccp.
deleted_user
deleted_user

I had PR and the flares never lasted more than 24 hours. The first year I was sick. They just traveled around. They were as painful as RA, but didn't damage, because they weren't flared long enough.

Then RA came. For real. I hope you are in remission. I have heard it can happen. Please figure out what you did, and bottle it. I will pay any price to get this disease under control! LOL
camba
camba

So hope this lasts for you. You are too young to have to face a lifetime of permanent symptoms. Glad you seizing the freedom from pain to exercise and keep fit.