PMR or Fybro ?: I've been treated for PMR for the... - PMRGCAuk


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PMR or Fybro ?

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I've been treated for PMR for the last fourteen months now however, last time I saw my rhummy he told me I was Steriod resistant and told me to taper off them he also said I could now have fibromyalgia ? I'm down to two mg of pro but I now have wide spread pain. My calfs, feet, hips, wrists, shoulders, elbows hurt, I wake up feeling like I've done a workout as all my muscles hurt πŸ˜• I don't really know what to do anymore? I also feel exhausted very quickly but think this is because of the pain.

Any advice please.

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I would go for second opinion . You have not treated long enough and what does he mean by steroid resistant?


The rheum I saw said I was one of the 20% who had atypical response to steroids. In essence according to him my body does not use steroid effectively and thus I am on steroid sparing agent. Been in it for 6 weeks and esr and crp back in "normal" range but I don't feel any better. Still on 13mg of pred. I have chronic pain/fibromyalgia which has been pretty much ever present for 10-12 years. Pain is indeed exhausting. My experience of being on 15mg for first month after diagnosis was that the newer PMR pain was controlled but fibro/chronic pain still needed controlling via opioid and amitrypiline.

Was pred controlling your pain at any point? If so second opinion. Easy for me to say but I appreciate getting it in place is a nightmare when you feel rubbish.


Your rheumy is talking drivel, To be at 2mg (3mg would probably be better) after 14 months is brilliant. PMR lasts up to 4 to 6 years for half of patients. A quarter need longer - and the quarter who get off pred in under 2 years are at a higher risk of having a relapse.

You could try a slightly higher dose to see if that reduces the pain you have developed - fibromyalgia doesn't just develop out of thin air or PMR - and it doesn't respond to pred. If it goes away - you are neither "steroid resistant" nor have you got fibro. Steroid resistant? Don't think he knows what it means.

How does your GP view the situation?

Seems to me you've come down in dose very quickly. I'm 10 months into my pred treatment (about 18 months of pmr including pre-diagnosis and treatment), and am now just staggering down from 11.5 to 11mg. Previously I reduced more quickly, in line with my GP's instructions, and had a flare that meant I had to go right back to starting dose. Since then, I've stuck to my guns and only used a tapering plan that takes account of my symptoms - after all, we are the only ones who truly know how our bodies are feeling/reacting.

I'm no expert, but as I understand it fibromyalgia can be eased by painkillers such as aspirin/codeine (depending on severity I suppose), which won't touch pmr - so that might give an indication.

Hope you manage to get some effective help with this.

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