Polymyalgia Rheumatica

I now have another Autoimmune condition (Polymyalgia Rheumatica) to add to my UC woes. Be interested to know of anyone else with both conditions.

Hi Decaf4me,
Had a really difficult few months of increasing muscle pain and stiffness and ended up eventually having to sleep on a chair because the pain and difficulty getting in/out/ turning over in bed was overwhelming. My Dr suspected Polymyalgia but my bloods were pretty much ok although apparently in 20% cases that can happen. She suggested 3 weeks on 15mg Prednisolone and said it would prove a point. Within a few hours of the first dose I was pain free. Couldnt believe it worked so quickly. She is hoping to start slow taper after the 3 weeks which is the usual approach for PMR. I had been adamant beforehand that I didnt want ot take steroids but when things became so bad I was willing to try anything. My ulcerative Colitis which I was diagnosed with in 2014 gave me a pretty tough time last year but with increased medication and lots of help and advice from folk on this forum I have been in remission since February. Thats about the same time the Polymyalgia started to rear its ugly head. Have done some research and found that people with UC and other IBDs have a greater change of having other Autoimmune disorders.

Have lowered all my UC meds now and am on maintenance Pentasa slow release granules 2g daily + Salofalk suppository 1gm every 3rd day. It was foam ememas that helped finally get me back in remisssion and I asked for them after advice given in this forum. Think if your muscle pain was Polymyalgia you would know it. Always bi-lateral as well. My started off in my shoulders and upper arms then after a few weeks progressed to my hips and thighs so much so that I had to lift my own leg into the car etc.terribly painful in bed - I was very tearful at times. My fear of Pred put me off going for help till I could bear it no longer.

I have pain all over, current dx is fibro, has also been lupus and then connective tissue disorder. I just got through trying methotrexate injections which did nothing. I actually feel a little better after being off them for a week or so. Still have pain everywhere, prednisone does take away this pain but I can't live on prednisone the rest of my life. I am just starting low dose naltrexone which my rheumatologist prescribed at my request. She wanted me to try Lyrica. Fingers crossed the LDN works!! I also am doing aqua therapy 2 - 3x per week. It helps me stretch out. I do think muscle relaxants would be beneficial.

Hi decaf4me,

The pool is around 89F - 90F so yes all your muscles loosen up. It is hard to get out!! I have been off pred since mid-January, was on it for aprox 2 yrs. I just saw a picture of myself at Christmas, omg, between the 50lb gain and the pred face I look disgusting!! So glad to be off it, lost 20lbs without even trying but have been struggling to lose more on methotrexate.

Last night was hell, not sure if it is from stopping Tramadol or starting the LDN. Couldn't sit, uncomfortable in any position, but couldn't fall asleep either even though I was exhausted. Had chills and funny aches in hands and feet, and I don't even want to talk about the rest!! Today is a bit better. I still have pain but its not as acute in pressure points. I will give it a month.

Hi decaf, I had to take my daughter to the theater last night so I decided to stop taking the naltrexone. Didn’t want a repeat of the previous night! I do think it may have been caused by the tramadol. I am only taking Tylenol now too. I need to be able to work! Hope you have a good day!