PMRGCAuk
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PMR or Fybro ?

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 😕 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?

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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.

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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?

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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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