Anybody know anything about this one? Might explain why symptoms come and go, disappear, then you are accused of making it all up:
http://www.mayoclinic.com/health/palindromic-rheumatism/HQ01 171
Palindromic rheumatism is characterized by sudden and recurrent attacks of painful swelling of the joints and surrounding tissues. Attacks may last for several days or just a few hours. Between attacks, pain and swelling completely disappear.
Interesting. What I found most interesting about this is that it does not cause permanent joint damage. Gramma - me too, that's the part I found the most fascinating - I have no xray proven joint damage, that's been part of my problem of not being believed. CathyThere is a great site palindromicrheumatism.org for more info. My rheumy thought this is what I had very early but the symptoms quit going away. Many with PR turn into full blown RA and I might have had PR for years but like a lot of us ignored the symptoms and decided that I just injured myself.This sounds so much like what I have. I also don't have joint damage but IHi all,
I have Palindromic RA. This is what I've been able to find from my research - PRA usually hits the big joints first and as it progresses it will move to the smaller joints. Depending on who is doing the study - PRA has a natural remission rate of up to 50%. Meaning - something in the PRA people is eventally able to fight the disease off. Of the people who have PRA and do not fight it off - up to 50% do not get joint damage. As PRA progresses it can lead to regular RA which, of course, has joint damage. There is something funny in the PRA people in that they may have a completely different set of genes that activate with the onset of the disease. I asked a friend with PRA to forward me the research she found that recently was done in Korea about that but have not read it myself yet.
The IPRS that Bonny talked about is really interesting. The sysmptoms people mention there run the gamut from mild to severe. The really interesting thing I've noticed is the pain level. It seems to me that most PRA people have pain off the charts - ie 'saw your arm off' pain. Some research I've seen says our bodies are really trying to stop the spread of the disease by basically 'choking' off the area. And, after the 'attack' everything looks normal again. No damage on X-rays (in the beginning) the redness (or not) disappears. And we look like we're making it all up.
I had multiple attacks that came about 6 months apart. Just long enough to forget about it. Then it started coming monthly. Then weekly. Then all the time. I think I was heading straight to RA but managed to reverse it's course of action.
Hope that helps.
Pip
Bonny - there are a lot of people on the IPRS that have had the symptoms stop going away. They still think of themselves as PRA. Don't you anymore? Why not? (Hope I'm not being nosy)
I thought (and still think) I had PR. I'm pretty much symptom free between flares and I would consider my pain when flaring "off the charts" as Pip says. It's so extreme that I can't concentrate on anything else. I also realize that people experience pain differently so what I perceive as a 9 could be someone else's 3. But, the fact that my pain comes and goes is the biggest reason I think I have PR.
I'm not sure why my RD thinks it's RA. It might be because of my labs. I believe with PR, the labs are "unremarkable" except for the inflammatory markers during the flare and possibly the Anti-CCP. I think those that will go on to have RA can also be RF positive. With me, everything was highly elevated or abnormal, including RF, Anti-CCP, ANA, C3, etc.
Girl,
If you think you have it, you probably do. You know more about your body than any doc relying on tests to make a diagnosis.
The biggest thing about PRA is that the 'attacks' tend to be asymetrical at first. For me it was my shoulder (big joint) then knee (big joint) and as it progressed melded more into the smaller joints.
I was also 'off the charts' on the tests. My RF was 706 when I started AP and I started dropping right away, down to 395??? in something like 3 months??? And I am definately PRA - confirmed by 2 docs. I also had wierd neurological issues that resolved when I got the inflammation down. Can you get a second opinion?
If you are PRA you have a real good chance of beating the disease (so I think LOL) because of the nature of the beast. Also, think about lurking on the IPRS for a bit. They are a wealth of information.
Pip
Pip,
If I did have PR and not RA, how would I "beat" it? I didn't think there was any cure for PR either.
When mine first started it was in both the large and small joints, but it would migrate every few days to a different joint for a couple of weeks, then I would have between 4 and 7 days of "peace" before it started all over again. After a year, it did tend to settle in the shoulders, writs, and knuckles, though for the last couple of months I've been experiencing pain in the balls of my feet. It doesn't migrate any longer and tends to stay in a few joints for a long time when I flare. Sometimes its three weeks and I can wait it out. Other times (especially when it's in the shoulders), I just can't wait it out and I give in and take prednisone. I've had three flares in the last three months. When I don't flare, I feel fine - I think, "I'm cured!" Then, I feel bad for complaining, at least until the next flare.
There's a woman on the RB who has fired 2 AP docs. She had a really bad case of Lyme and had an RF over 7400. Yep, you read that right. When she went to the new doc he said something like "there has never been a disease that somebody who wanted bad enough has been unable to beat". She liked his theory - that if we worked hard enough on this we could beat it. For some it may mean a pain free life. For others it means "no meds of any kind". I'm in the last group. This woman has been working hard on healing using antibiotics, natural anti-microbials, diet etc - and I think at the last doctor appointment, was down to 1700 on her RF. She's moving in the right direction.
I know I can beat this - if I find the right combination of diet, healing the gut, antibiotics etc. And I'm working on it. It's part of the reason we moved 2500 miles away - to be near more, shall we say, experimental doctors.
For me it was easy - I knew I became sick after an abscessed tooth was extracted. At the time I did not know of the connection between AI diseases and dental work. But they were treating the tooth with antibiotics so I knew it had to be bacterial. Following that thread in research I found the Roadback.
If we have to have an autoimmune disease - Palindromic is the one to get. Think about it. Depending on the researcher, we have between a 40% & 50% chance of going into a natural remission. And even if we don't - there is research that points to the pain level as being one of the reasons we don't get joint damage. The body is fighting a 'skirmish' for one of the joints, say the knee, and sends everything to that area to try and isolate the antigen. It seemed to me to be more connective tissue than actual joint, but the posts on the IPRS said they would get joint pain but not as much connective tissue. Either way - damage is NOT being done while we are trying to get our bodies to do what it was designed to do -> fight this infection off.
Even if we move to regular RA - we can, in theory, reverse the course of the disease with antibiotics. The problem is - these mycoplasma get into the very cells designed to help us fight off infections. Some of the reading I've done lately shows that "nothing" will touch the last batches unless your body is well enough to kick them out on it's own. Hence the diet connection, the gut connection etc.
I think I have 'reversed' enough of my disease so that I am definately PRA again. The question is - what more do I need to do to get my body to handle the rest of this on its own and send me into a natural remission - one without antibiotics? The problem with AP is that people start feeling fine, stay on it a couple of years and then go off. If there is even a 'twinge' you are not in a natural remission. Period. And without healing the gut, more parasites etc, will escape the intestines and you will be newly reinfected. So, you become sick again - and the second time around the myco's have mutated enough so that it's harder to get them under control.
This is not an easy process. That's why most people stick with antibiotics for life. Or listen to their traditional rheumies who tell them AP doesn't work. Who wants to do all this work when they can take a few shots and have no pain? Or reduced pain?
Me? The nature of PRA says I have a better shot than most AI diseases to get a natural remission.
But even if you have a 'regular' AI disease - like RA or Lupus, you can still do this - and still have a shot at the natural remission - it's just a longer shot. But it's still a shot. No?
Pip
So I guess that means I have an "unnatural" remission or, at least pretty darn close to it. I don't know anything except I've had just about 9 years that have been relatively pain free, thanks to Enbrel and MTX. I'm 42, in good health, eat right, exercise, etc. That after having 3 years of pain, inflammation, and joint damage is more than enough for me.Sarah -
That's what I mean! If the meds are doing it and you take the meds away - what sane person says thats a 'real' remission? Yet these docs do it all the time!!! I've read so many posts here that say "I'm in remission and I still hurt!". I'm nowhere near actual 'true' remission and have progressed from screaming pain on the floor to a feeling a little bit yucky - and I didn't even feel yucky until I moved and screwed up all the hard work I had done. (Praying I didn't blow it for myself long term).
Hessalina -
The hormone link is there - I just haven't figured it out. :-) Have you noticed how many people post there onset is after the birth of a child? Or as they're approaching menapause? Or starting mense? So many people also report thyroid problems and adrenal problems. It has to be some sort of combination that the body cannot recover from. Like a leaky gut, a recent infection, hormones off and WHAM, here we are!
I think I went quickly to regular RA because as I was getting sick I was also 'over-dosing' on Aleve. I apparently just thought you could take a gazillion pills just like you could with asprin. I did NOT read the bottle which I later learned says only 2 a day. I was taking 6, 8, ???. Anyway - I think that was the final straw. The only thing I can say for sure is that when I started on AP my healing/herxing was sysmetrical, just like my most recent 'attacks'. On my 3 month herx I became as scared anything. It was just my right hand. Not both hands or both knees, or whatever. You have no idea the relief I felt when I realized I was back to PRA. This stuff really does reverse the progression of the disease. I had thought it was some sort of weird 'group think' from other AP'ers. You know - comparing war stories or something.
So...maybe if I'm back to PRA - maybe I can 'trick' my body into doing the last bit by itself. It doesn't hurt to try.
:-)
Pip