Palindromic Rheumatism | Arthritis Information
Has anyone had to deal with this? I was just told today by my RA dr. that this could be what's been happening to me. The sharp horrible pains i had in my neck that came on quickly on Friday , then went away in 2 days. I've had this happen several times, different areas of my body. He said it's missed a lot of times in diagnosing people, and not a lot of information on it. Here's an article I found on it through John Hopkins.
Kelly
Hi Kelly,
Join the PRA club ---- lol
I am one of the few who have this disease too --- listed asd one of the rarest diseases in the world.
The pain when a flare happens is around 9-1/2 on the old painometer scale of 1-10 and for me nothing but nothing eases it -- when I got them my flares used to last around 3 days and travel round different parts of the body during the 3 days as well and then gone ... poof., as if it hadn't happened .....
Check out the RoadBack website (USA)-- and Palindromic Rheumatism site (UK)
This disease can be known as :
Hench-Rosenberg Syndrome
Palindromic Rheumatoid Arthritis (PRA)
Palindromic Arthritis (PA)
Palindromic Rheumatism (PR), or
Palindromic Syndrome (PS)
These are all names to describe the same disease, and it is a rare type of inflammatory arthritis. The symptoms are often mistaken for Rheumatoid Arthritis (RA) symptoms.
Palindromic Rheumatoid Arthritis is considered by most medical doctors and researchers to be an 'auto-immune disease', it is rare and there is no cure. PRA is the only AI disease that has an up to 50% natural medical free remission rate. All other AI diseases hae a less than 1% chance at achieving remission.
Should you need any further info just ask...
Maz
Hi Maz,
I am so relieved to figure out what's going on. Thank you so much for all your info. I will check out RoadBack website (USA)-- and Palindromic Rheumatism site (UK). Your symptoms are exactly what's been happening to me. Just comes on really hard, all the sudden out of no where, hurts like crazy, heating pad, ice, medications...nothing helps. I've been to my pcp a few times...she thought it was a pinched nerve, gave me muscle relaxers...didnt do a thing. My RA dr. just had no clue...wanted to send me to an ENT...then brought up this Palindromic Rh. idea. These dr.s I swear thought I was crazy and making things up. My family just thought I slept funny on my neck ,or hurt myself some how....it's good to know what im feeling is validated.
Have you ever had stabbing horrible pain inside your throat...towards the middle when you swollow? it will hit me there at times...last 2 days and completely go away all the sudden, scares me to death.
Thank you again for this info, it's much appreciated!
Kelly
I was initially diagnosed with palindromic arthritis. My dr at the time told me it could eventually turn into RA, lupus or just plain go away. I ended up with RA. But I have been told that if you treat it aggressively it might be more likely to disappear.
Hi Kelly,
You are welcome ....
Knowing what you have can actually help you adjust to a life of having a disease, I know it did for me .... once I realised I had it for life and there wasn't a cure I went about researching everything and anything that could ease the symptoms. Knowledge is a powerful thing.
The majority of doctors seem to want to treat the symptoms of PRA the same as if you had RA with the same drugs; but at the same time they say to me 'we don't know how you get PRA so we don't know how to treat it' - strange thing to say I think ... but if you want to go ahead and treat it with heavy meds that is OK as long as you are informed and aware of all the possible side effects. For me I am treating mine with AP therapy (see my signature line for what I am on) and although it is a long hard haul it seems to be working for me. I have my life back, I have resumed full time work etc etc. I just didn't want to take any drugs that were going to destroy my immune system and possibly my liver and kidneys as well, plus most of them will eventually stop working and you have to go on to something else.
Flares are the pits - you never know when they are going to hit, there is no preamble that you can recognise or if it is like mine I have a 10 min window before the pain hits. My flares used to come every 5-6 wks and hit wherever - they lasted for 3 days and poof gone.
Just remember, PRA is not degnerative and won't destroy the joints. My own PRA is confined solely to the soft tissue and connective tissue (not the joints themselves). You can figure that one out yourself.
It's been a while now since I had a flare but I can still remember the pain .... I have cupboards full of pain meds including morphine - but I don't take them unless I really have to because most of them just don't work anyway --- for me COLD worked better than heat.
There are also many things you eat (ingest) you should avoid, mainly gluten and certain fats.
Don't give up - keep strong - research and read everything you can - make informed decisions regarding your treatment path - get your doctor to listen to you - tell your family you are having a bad day so they understand you are not just in a bad mood.
For me - my goal is remission within 3 years - (I have had PRA now for about 10 mths).
Maz
Hi Maz,
I read the article and most of the information on the Roadback Website. Very, very interesting. Thank you for all your info. I do hope you and your family are doing well and hanging in there. You sound like a very strong person! I dont have any doubt I have RA, they said Moderate to severe when I first was diagnosed and I sure remember the pain, not able to walk, pain on both sides getting worse and worse. It is now pretty under control with Plaquenil, Celebrex and sometimes Medrol. It does scare me to think of taking these things long term... You know, one thing I was curious about...I had heard of antibiotic therapy at one time, but then heard that if you use this type of therapy, your body gets used to antibiotics and builds a resistance to it, then will be very hard to fight of any infection you may get in the future that you would normally need antibiotics for. Any thoughts on that?
Kelly
[QUOTE=klynn141]
Yes the RB site is interesting.
My thoughts are -
1 Remember you never get rid of infections they just lie dormant in your system,
2 Yes any antibiotics you have ever taken reduces your bodies ability to utilise them in the future - hence why the doses go up and generally last longer,
But AP is such a small quantity of abx and it is usually taken MWF with days in between (so it is not continual) that it isn't really a problem, other than you should take lots of probiotics as well to replenish the good bacteria in the gut whilst you are on abx.
Having said that, remember any long term medications have to be tweaked along the way and that includes plaq and metx so too does the abx used in AP need to be tweaked to suit, that's why it is obviously better if you have a doctor who can monitor you and your symptoms - sometimes it is just to change one little thing for a month then change it back again.
The main thing is that you should ensure you are informed about all the possibilities and side effects of anything and YOU should agree to go onto a treatment path (with the help and assistance of your health professional) not just be a person who lets a doctor prescribe whatever and you not know what will happen or what to expect. You are the important person here.
It is really simple, you need to be informed. Ask questions, read, research and learn, then you will be able understand what your doctor/s are telling you and you will be able to make an informed decision and have some input into what treatment path you would like to go down.
It really is up to you.
Good luck
Maz
[QUOTE=klynn141]Thanks Suzanne. This does seem a much safer route, especially for your little one. May I ask if she's doing well on this? I have 2 sons, I wonder if some day they will get what I have and worry a bit. I also question whether I should even think of having another. It's hard to know, I hear some say genetics play a role in whether your children will get this or not. [/QUOTE]
We are happy with how our daughter is doing so far. She is not in remission, but it is gone from bigger joints that were affected before AP - knee and both ankles. She has a very happy life and is even more active than her healthy older sister was at the same age.
She has been on mtx and NSAIDS in the past, but neither have helped her joints and she had side effects from them that affected her quality of life. We just take one day at a time and are thankful for all the days we have had that she can live like a normal little girl!
Genetics - I know many posters have a lot of AI disease throughout their families, but that just isn't the case for us. On my dad's side alone, I have 27 cousins who all have children, too. No jra except for my daughter. But I completely understand your worries because I worry about my older daughter all the time.
Hi Suzanne,
I can only imagine what it is like to have a genetic history of this stuff and then to live with it with your own child ....
For me - I believe that it doesnt matter what you take or what treatment path you choose as long as it gives relief to the symptoms of this dreadful disease it is doing some good.
There is some merit to not worrying about things that haven't happened yet -- although so difficult to do.
Good luck
Maz
klynn,
I decided to bump this. I think that some of what has been said needs to be verified or refuted. This from PubMed:
levlarry2009-08-03 14:19:30Thanks levlarry, I should've looked in the archives before posting, i had forgotten I asked about this ...Thanks for the info klynn,
You are very welcome. Be sure to go to the palindromic rheumatism forum. You will trully enjoy Katie, the moderator. Much of what was said on this thread is not true. This is what Maz-Aust said:
"The majority of doctors seem to want to treat the symptoms of PRA the same as if you had RA with the same drugs; but at the same time they say to me 'we don't know how you get PRA so we don't know how to treat it' - strange thing to say I think ... but if you want to go ahead and treat it with heavy meds that is OK as long as you are informed and aware of all the possible side effects. For me I am treating mine with AP therapy (see my signature line for what I am on) and although it is a long hard haul it seems to be working for me. I have my life back, I have resumed full time work etc etc. I just didn't want to take any drugs that were going to destroy my immune system and possibly my liver and kidneys as well, plus most of them will eventually stop working and you have to go on to something else."
Most Doctors do know how to treat PR. Yes, the cause of PA is not known, but so is the cause of RA not known as are many other diseases. Fortunately real Doctors do know how to treat both PR and RA and give relief to those that suffer from the diseases. Maz-Aust likes to try and scare people to the roadback. She is just a sales rep for the roadback. Be very wary. Trust real organizations like the American College of Rheumatolgy. Made up of real doctors and scientists and the information and advice can be backed up with science and medical facts. Always get your information from real doctors. Maz-Aust says that she didn't want to take the traditional meds because they destroy the immune system. Another lie she uses for a scare tactic. Wishing you well on your journey. It may not be PR. Get good doctors and follow their advice. Watch out for those that have an agenda and no science. Go to the PR forum and have a good talk with the moderator, Katie. I think you will like her. Many PR sufferers there have found relief with the drugs that doctors know do help. As you can see, Maz-Aust wants to keep her info secret and so asks for all information be with private messages. You would think that if anyone had good and true information for sufferers, they would post it to the complete forum. The problem is, if she posts smack on the open forum, she will be called on it. Here is the direct link to PR forum. Talk with Katie. She has no agenda.
LEV
levlarry2009-08-04 18:50:55Hey Maz-Aust,
Which rheumatoid arthritis drugs destroy our immune systems? You said it. Inquiring minds want to know?
LEV
I can't speak for Maz, but I think she probably was talking about the immune supressant qualities of the meds we take. Destroyed is the wrong word. I don't know if she misspoke or if she misunderstands how our immune systems are effected by our meds.
Linnc,
If you can't speak for Maz-Aust, why speak for her? She knew what she said. She certainly knows the difference between suppressing and destroying. You have to believe that she is at least that knowledgable, right Linnc? It was nice of you to let Babs know that she didn't have to apologize. It's not like she gave up some personal information that she got in private to another "good friend" member, right? Now that would certainly warrant an apology, right? Only God knows.
LEV
Well, Lev. I don't really know what to make of your post. I mean, did I do something to you? If yes, just say it, ok? To answer your question, yes. That would warrent an apology.
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