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Author Topic: palindromic rhuematism  (Read 5487 times)

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Offline Liesa

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palindromic rhuematism
« on: December 09, 2007, 12:05:02 AM »
Hi
im new to this site and wished i had found it earlier
i have been diagnosed 22 years ago with palindromic rhuematism, i was 25,
anyway 22 years later i have had 1 arthoscopy in 2005 to find out the cause of the pain i had had in my left knee for about 5 years, then i had a knee replacement surgery in june 2007, yes just a few months ago, i have more pain now then before the TKR, i had a further arthoscopy 3 weeks ago and still havent heard if anything was found, (dates were muddled for me to see my consultant) appointment now for the 8th jan, he took biopsys, am assuming no news is good news?
i am finding it very hard to cope with my knee pain and the swelling etc of my other joints of which none come close to the pain i suffer with my knee, at times i feel totally desperate and nobody understands i just wanna be like before the op, i had a lot of pain but was so much more mobile, i was told 22 years ago i had the start of rhuematoid arthritis
Liesa xxx
arthroscopy  sept 2006
TKR  failed  june 2007
arthroscopy november  2007

Offline Jaci

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Re: palindromic rhuematism
« Reply #1 on: December 09, 2007, 10:58:57 PM »
Hello Liesa,

I'd never heard of palindromic rheumatism until I saw your post and then Googled it to learn a bit about it. I have an inflammatory arthritic condition called ankylosing spondylitis (AS); it's a type of non-rheumatoid arthritis. I first started having symptoms of it as a teen, but was not diagnosed until I was 22 years old-- that was 28 years ago. I've had a lot of ups and downs with it, even some periods of relative remission. It's tended to affect primarily my hips, spine, neck, hands and feet, but it seems to have moved into my knees following an injury in 2003. I had knee surgery in December 2003 which my body responded to by developing severe inflammation and swelling and forming of masses of scar tissue-- a condition called arthrofibrosis. I have the recurring type of arthrofibrosis that is believed to be an exaggerated immune system response. I had several surgeries in the last few years, and earlier this year a rheumatologist finally connected that, most likely, the arthrofibrosis is related to the underlying inflammatory immune condition-- ankylosing spondylitis. (Around 1% of people who have knee surgery develop recurring arthrofibrosis, and about 1% of the population has ankylosing spondylitis, which is also far more common in men than women. So it's no wonder that it took some time to finally connect the dots.) My rheumatologist has been very aggressive with treatment for my AS; I started one of the arthritis super-drugs, Enbrel, in May. It seems to be helping as my knee is finally not constantly swollen and inflamed.

Can you tell us a little about the reasons for the arthroscopy following the TKR. I understand you were having severe pain. How was your range of motion? Was your motion restricted? Did your knee feel stiff or tight?

Besides doing the biopsy, has your doctor tested you for allergies to the metal in the replacement and the cement that was used?

I know what it's like to have pain that is completely overwhelming. It can really wear on you both physically and emotionally. I started going to a pain management clinic last fall. Besides having doctors that are specifically trained to help patients with chronic pain, they also have psychologists, physical therapy, bio-feedback, and pain classes geared toward helping people deal with severe, chronic pain. I was at my wits end with pain not only in my knee, but also in the rest of my body from the AS. While it hasn't eliminated the pain, pain management has helped to make things a little more bearable.

I hope your doctor has some answers for you when you see him in January. Is there anything that can be done between now and then to give you better pain control?

Welcome to KNEEgeeks. I've been participating on the bulletin board for a while now and can honestly say that the support I've gotten here has helped me through some very trying times. You may not find others with palindromic rheumatism, but chances are you will find people who can relate to your struggle with pain and loss of mobility.

There is a section further down on the board in the "Arthritis Department" called "Knee arthritis-- total knee replacement." It tends to be a bit busier than this section so you may want to take a look or post down there as well. There's also a board in the "Games room" called "Know each other? Just want to chat?" it's good for some comic relief or just plain venting.

Hang in there.

All the best,

Jaci

« Last Edit: December 09, 2007, 11:05:41 PM by Jaci »
10/03 Twist injury
12/03 Menisectomy- tears ACL, MCL, & LCL missed by OS
Arthrofibrosis ROM 38-68
3/04- 4/08 Multiple scar tissue procedures:
6 scopes w/LOA, AIR, LR, chondroplasty, synovectomy, bone spur & plica removal
3 insufflations, many injections
Chronic AF, patella infera, IPCS

Offline Liesa

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Re: palindromic rhuematism
« Reply #2 on: December 28, 2007, 05:00:33 PM »
Hi Jaci
i am a member/moderator of a brilliant site for pailindromic rhuematism
http://www.palindromicrheumatism.org/

some great members on here, and they have helped me with support etc

the reason i had arthroscopy after TKR was to see if there was a problem inside my knee any infection etc and they took several biopsies to which i have heard nothing yet, am going with no news is good news, we also saw an article in the national newspaper here in the UK have
added a link to it as it takes up to much space http://www.thesun.co.uk/sol/homepage/news/article515524.ece
i am about to visit my Dr's surgery in 5 minutes to see if he can do anything to help me as i cannot take anymore pain, i spent last night crying through the night and then taking the oramorph, liquid morphine i have left from the originial surgery in june, that didnt do much either
will come back later
thanks for answering me xxx
Liesa xxx
arthroscopy  sept 2006
TKR  failed  june 2007
arthroscopy november  2007