I know you can be PRA, and then convert over to RA. So... it only seems logical that it can go both ways, but then again not everything is logical Well, my AP doc switched my diagnosis to RA - and switched me back to PRA on this last visit. So, I'm guessing you're correct.
Hugs,
Pip
here ya go.....at least it is one version of it.
Palindromic rheumatism is characterized by severe inflammation in the joints that is episodic-- each episode lasting from several hours to several days before resolving ccompletely. In between the episodes, the joints often feel normal. The frequency of the episodes is also variable. In many cases, palindromic rheumatism evolves into more classic RA with persistent pain and swelling in the joints.
Nice to know. Learn something new everyday.
It was one of your posts PIP! that made me think of that question. I just found it interesting and then that question popped into my head.
It does seem like if you do convert back and forth, that it would be confussing to say the least.
In the beginning, it's totally like jtamazqn (good lord woman, we need to abbrieviate that) posted and by the time you get to the doc, everything is GONE and they look at you like you're a crazy person. But I don't think most docs think we can go back to being PRA once we're RA. I think I'm lucky in that I was only a 'little bit' RA when I started treatment. I email 4 other PRA peeps (3AP and one Diet and herbs) and they all 'reversed' too. Maybe it's the nature of PRA.
Pip
Pip~ maybe you have both RA and PRA. Wonder if that's a possiblitly.
Oh that is a good one, Link! I wonder if it is possible. I read everything out there on PRA - and there ain't much. LOL I think once you progress, that's it. Like with regular RA, then you can go on to more of these diseases, like Lupus, or Srogrens or whatever.
The figures of PRA is something like this.
50% get a few attacks and then totally resolve - like nothing. Their docs probably didn't even diagnose them as PRA, they get called 'bursitis', or 'tendonitis', or something else because it's only hitting one large joint. I mean, they spend the rest of their lives as 'normal' because something in our bodies fights like hell against this disease. That's why I am insistant that PRA is not nearly as 'rare' as they say. How would they know? - nobody is tracking us.
25% get smaller and smaller cycles but stay 'erosion' and damage free - for the rest of their lives. But it does progress and likely becomes both sides at the same time with some single joint attacks.
25% move on to regular RA. I think I was here because at the time this was all going down I didn't realize what aspirin could do to your stomach and GI tract. And, I was ALSO poisoning myself with Aleve. I mean, I was popping 12 - 14 of those a day. That's when my LFT's started getting out of whack and I had 3 elevated LFT tests in a row. And, as that was getting worse I moved to both sides and the smaller joints. I have one toe on my left foot that started moving left. I mean, I could 'feel' it; a constant itch, ache, tingle and it was really beginning to hurt. By the time I started AP I was a mess, I couldn't sleep at night except in a chair, I couldn't walk, I couldn't pick up my daughter. So, I'm pretty much sure I went straight into RA and had I known then what I know now, I could have stopped that progression if I'd protected my liver (master detoxifier) and just started AP when I could have gotten a script. But NOOOOO, I had to have tests - I kick myself now for delaying that extra 6 weeks.
AP is two steps forward and one step back, but because I'd never been on any of the traditional meds (except Pred which made me WORSE) I had a pretty easy time of it re: herxing etc. (This is only my OPINION on trends I've seen in posts on the RB. It doesn't have to be like this - but it's what I've noticed from other people on this treatment plan). Depending on what happens when you first start AP can give you an idea of how it's going to play out. I was an 'early responder' which translates to - I didn't get knocked to the floor starting AP - I just got better. But those of us that 'just slowly get better' tend to hit 'turning points' - we tend herx like hell in certain ranges. For most, it's around the 3 month mark, then the 6th month mark (killer case of pneumonia for me), then sometimes at a year, and sometimes at 18 months (heading there soon, so keep your fingers crossed LOL).
My 3 month herx was a dilly. It didn't hurt - but it was ugly. My hand blew up. It was HUGE. And it freaked me like you wouldn't believe. Of course, my hubby was out of town and I had nobody to ask about it so I posted on the RB and they said, relax - only a herx. It took me days to figure out what was freaking me out - I mean, no pain but??? THEN I figured it out! It was ONE HAND! Every herx since I'd started AP was both sides of the body. Since that 3 month herx - every herx I'd had was on a specific joint - not both and not 2 sides at the same time. I think I 'reversed' back to PRA.
Now, when I joined the RB cult, I'd seen post after post on these diseases reversing. I really didn't believe it. I mean, really, just how likely is that? I truly thought it was 'group think' and everybody was just agreeing with each other. Until it happened to me. I think for people who had this come on slowly, they wouldn't be able to notice it so much. But for PRA - NO WAY can you miss the reversing. I mean, seriously, it's that noticible. First my shoulder. Then my knee. Then back to my shoulder. The only herx that didn't match up with the progression was my big toe pre-diagnosis when they thought it was gout. I was even afraid to throw out the ugly old lady backless slippers I was forced to buy so I could shuffle because I was SURE it was coming...but it never did. So, the reversal isn't perfect...but it's there.
So, guys - this is a long winded response - I think I did have both, but not anymore. Too bad we can't get some docs to study this.
Hugs,
Pip
I'm still so new to this, but immune disorders seem evil in nature. Like someone dreams up a new way to torture us each day. I would think you could easily have any number of illnesses all taking turns to make your life miserable.
Very enlightening, Pip. Thanks for the read! i'm really not sure, but during my diagnosis, i have been RA, OA, Behcet's Disease, allergy to various things etc. etc. etc.
They settled on RA and Dairy allergy.
I don't think doctors really know enough of these diseases and new symptoms are showing up every day. It started just the knees, then it was that it can be in any joint, now it effects your organs etc.
It is still too unknown I think for anyone to fully know what we have or don't.
My husband always says it is all the same disease effecting people differently.
I think your husband is right. MHO - it's started by infection and what you get is what genes you have. I really want to get the RA gene test. Like supposedly some of us don't have the gene for RA but still get RA...what's up with that? Well, supposedly, the Koreans have recently said PRA peeps have different genes that activate (which would put us in the different disease camp instead of the subset of RA camp). So, if I have both genes then it's entirely possible I have both diseases. Or I was 'wrong' about what I was feeling.
I'm a test kind of girl...if I know for sure then I know how to focus.
Hugs,
Pip
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