Saw a consultant privately I have Palindromic Rheumatism

JenniferB27

So finally have a diagnosis of Palindromic Rheumatism as well as Fibromyalgia which he thinks the arthritis caused and Hypermobity Syndrome! No wonder I've been feeling like rubbish for months. Doctor says that the Palindromic Rheumatism is rare so just wondered if anyone else has this?

dreamdaisy

At least you have an answer and an explanation, I hope that has helped. This has cropped up on here but people generally don't stay to help others who may find themselves in a similar position. Try doing a search on this board, I am sure previous threads will appear. I too have fibro as a result of my PsA and OA, what treatment did the rheumatologist suggest? DD

dibdab

Hi Jennifer,

I was initially diagnosed with Palindromic rheumatism around 12 years ago. Like you I had randomly swollen and painful joints, really sore muscles/tendons , fatigue etc . I think I probably had it for 2 or 3 years before it was finally diagnosed, during which time I'd had 2 negative rheumatoid factor blood tests. Eventually mine developed in to full blown sero-negative rheumatoid arthritis. I well remember the relief of finally having a diagnosis, you begin to wonder whether you're imagining the pain etc. I think I always knew RA was where I was going, my maternal grandma was crippled by RA in her 40's back in the days before there were any effective treatments. Happily though I have all the pain and fatigue of RA I don't have the same level of disability 12 years in.

In terms of medication I started with Plaquinel (hydroxy-chloriquine sulphate), they fairly soon added in sulphasalazine then methotrexate. I still take the first two but have replaced methotrexate with leflunomide.

I'm happy to share any insights I might have if you have questions. In the meantime, now you know what it is you can educate yourself to help deal with stuff. Keep talking and asking, it's much better than bottling stuff up. I've always been very honest with my nearest and dearest about when stuff flares and what I'm struggling with, I've learned the wisdom of keeping on top of pain relief, and I've learned to swallow my pride and ask for help when I need it! Early on my rheumatologist referred me to a specialist rheumy occupational therapist who gave me lots of good advice, and some helpful pressure gloves and wrist splints to support my joints in the worst episodes, it may be worth asking for a referral if you can.

Deb xx

JenniferB27

dreamdaisy wrote:

At least you have an answer and an explanation, I hope that has helped. This has cropped up on here but people generally don't stay to help others who may find themselves in a similar position. Try doing a search on this board, I am sure previous threads will appear. I too have fibro as a result of my PsA and OA, what treatment did the rheumatologist suggest? DD

Hi DD thanks for that! I have been given amitriptyline for the fibromyalgia 10mg to progress up to 50mg he said I need to do physio and psychotherapy too. I was expecting a magic pill to take it all away but it seems a tricky one. He wants to try to control this before medicating me for the Palindromic Rheumatism as he feels that fibro can quickly escalate into anxiety and depression if not treat early.

JenniferB27

To Deb thank you so much for that advice! I have had this for 3 years with negative bloods also. The consultant said this is rare and he is actually writing a paper on it. He wanted to treat the fibromyalgia first before giving me medication for the Palindromic Rheumatism as he felt this could escalate, I go back in 3 months so I'm hoping for helpful medication. This has all got worse over the past 3 months, the fatigue is u real, I'm only 45 and I feel twice that age, I'm off work sick there's no way in this world I could work the way I feel.

I really am hoping I get to feel better soon xxx

dreamdaisy

I wasn't aware that fibro could escalate to that degree, I know I have it but it's not that bothersome maybe thanks to the medication I take for the PsA. I live with a certain amount of stress thanks to ongoing pain (plus a newly-retired husband) and plunged into depression when the OA was diagnosed back in 2011. I have never taken amytryp but do take a small daily dose of Citalopram (another anti-depressant). DD

stickywicket

So you have a diagnosis and I can 'hear' that you feel relieved about that. Palindromic rheumatism can come and go so there aren't many, if any, forum regulars who have it. Here are some former threads though they start with the current ones so yours is at the beginning. http://tinyurl.com/yc45l45s .

Magic pill? Bring it on!

JenniferB27

stickywicket wrote:

So you have a diagnosis and I can 'hear' that you feel relieved about that. Palindromic rheumatism can come and go so there aren't many, if any, forum regulars who have it. Here are some former threads though they start with the current ones so yours is at the beginning. http://tinyurl.com/yc45l45s .

Magic pill? Bring it on!

Thanks so much for that!

Staceyjade123

Hi, I too have hyper mobility and Palindromic Rheumatism. I kept getting told I had growing pains or even tendinitis. It only took one blood test for them to see high levels of rheumatoid factor and something else that I’ve been told was so high in presence I have a 98% chance of chronic Rheumatism -whether that be in months or years. I got diagnosed 4-5 years ago and I have recently started to feel like it’s gerting worse but I don’t let it stop me doing what I want to do. I am 24 and so when I was (rather annoyingly) told by a specialist when I first got diagnosed to ‘do everything I want to now, because you won’t be able to at some point’ I knew I would go on the holidays, work hard to carry on building my career and for as long as possible not allow my pain to stop me doing anything. Even if I do have to rest occasionally.

It’s a daunting condition and I still worry about the future but it is important to not allow that worry to stop doing something in the now!!