Hey Pip, It's Nut here. I need a little more schooling here. What is Palindromic? I am going to try and look it up , but sometimes they are not very( should I say to the point). Like to know what people are talking about.
thanx a-nut
Hey Nut! Too cool on the name!
Palindromic is a rare form of arthritis. Some say we're not RA; others say a subset. Supposedly we have different genes that activate. It's known for it's migratory pattern and, usually, hits the large joints first. For me, it was my shoulder, then my knee, then my toe (they thought gout) then my wrists...then everything kind of went off at once. The time off between 'attacks' shortens. At first it was every 6 months. Then monthly. Then weekly. Then all the time.
The pain level is horrendous. I mean BAD. One nice rheumy I saw suggested ice packs (he's the one my hubby wanted to hit). The pain level is stupifying. At one ER visit, 2 shots of morphine didn't knock it out. That's the level I'm talking about.
Originally they said RA because of the RF but my CCP was negative. There is another PRA peep with a sky high CCP and a 0 RF. So...we can't be found on the usual tests. There is some neurological involvement...but I think that's from the inflammation.
We don't usually swell or get redness until we progress. So, we see docs who say...'it's all in your head'.
According to the researchers - something like 50% of us 'resolve' or go into drug free remission. There is something in our bodies that fights like hell to beat this disease. This, as far as I can tell, is the ONLY autoimmune disease to do this. The others have a 'spontaneous remission rate' of under 1%. Most people wouldn't even realize they were Palindromic. They'd get some weird hugely painful episode that the ER would chalk up to 'bursitis' or some such nonsense.
Then we get nothing. I mean NOTHING. The 'attacks' usually last a few days and completely disappear. So, when it happens again you make an appointment and....nothing. You're maybe sore; but that's it. We can spend years and years with 'it's all in your head'. You'll see posts here about how family and friends don't understand RA - try PRA. Seriously, in the beginning we're normal between attacks so they don't understand you get afraid to do anything for fear of bringing on an attack. The Gym? Anytime I went anywhere near the place I was down for a week.
Of the people that do not spontaneously remit - 50% go on to be Palindromic for life. This is usually less and less 'time off' and more and more horrendous pain.
We also do not necessarily get joint damage. There is research suggesting the pain level is some sort of protection.
Of the 50% that went on to be Palindromic for life...50% of them went on to be regular RA, including joint damage. There are some docs that say the pain will lessen over time. Not from posts I've read. I, personally, think we may get another disease, in this case RA. Like AI people can get RA, then Lupus. But that's my thoughts.
I think I went straight to RA, do not pass Go, do not collect 0, because at the time this was all going down I was poisoning myself by self-medicating with Aleve. I have one toe that started 'mutating' but it's slowing going back on AP.
My AP doc thinks Palindromic is almost always a sign of infection and AP will work for us.
I think if we reprogram the body, or 'reverse' this disease enough, we can get the body to do it's thing again. I think we can all (RA etc.) do that, but it's going to be easier for me since my original is PRA.
Does this make sense?
Pip
www.palindromic.org
Pip ,First of all I want to say I know all to well (about it's all in your head syndrome.) I would like to think that with research they could bring this moere under control. If there is a way to isolate the good gene's then reintroduce them back into your system. I know it's all in theory. It just sounds like they have something to work with. This is food for thought. I could see why it would be hard to DX it has a mind of its own! well I am going to go over and check out that web site.
talk to you in abit a-nut
I keep saying the Palindromic people are the 'key' to this. Your thoughts on gene therapy brings a lot of possibilities out. But, if we're another example of 'infection driven' (like reactive arthritis and Lyme) but with different genes - then that has a LOT to say on the nature of these diseases. Hence, infection and you have the gene of Lupus and you get lupus. See where I'm coming from?
Hope Suntan see this.
Pip