Hi.. needing advice. Saw my specialist today, who is now saying I prob don’t have PMR, as I still have some pain which the steroids (20mg) aren’t fixing. Wants me off steroids soon. Says that after 10 months on them I should be down to 5mg, that I’ll be fat if I don’t get off them. All my blood work is normal, but I still have some pmr pain in my shoulders hips and thighs. When first diagnosed last August, was pain free overnight from the steroids, so diagnosed with pmr. . Currently have an acute sphenoid Sinusitus infection which I’m seeing a specialist for this week, was wondering if that could affect the pmr. Specialist has suggested that I might have arthritis, but my joints are fine.
Would love any advice you can give, can’t bear to go back to being in pain and not being able to walk properly .
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Think perhaps you need a different doctor who doesn't have such fixed ideas - on that basis most of us on here don't have PMR. A study shows that half of patients get to 5mg in 18 months - but that equally means that half of patients take longer than 18 months. And 10 months is really very unusual. But the other point is that not everyone achieves total relied from pain - there are a few things that can contribute, not least among them being myofascial pain syndrome which is actually caused by the same inflammatory substances as PMR just they are localised not systemic.
However - are you saying you are still on 20mg after 10 months? If so - what has she been messing about at? The guidelines suggest that you should have been tried on 25mg as a start if 20mg wasn't achieving the desired result. If that didn't work - the acceptable result is a 70% improvement in a week or two - than it should have been investigated. An inadequate response to pred or excessive difficulty in reducing may suggest that it is something else. Though of course it does require you go about reducing in a sensible manner - not 5mg at a time! That brings its own problems.
Hi Pmr Pro.. thank you for your response. I started at 15 mg, last August, which was amazing. Until February this year, then I had pain return so I went up to 20 mg, but have had pain on and off since.
I think you’re right, need to change doctors. This is the 3rd one I’ve spoken to, they’ve all had the same mindset. Not sure how to find a doctor who is flexible in their thinking .
First you have to establish if pred does deal with the pain - by going up to 25, even 30mg to see. If that doesn't achieve a good improvement in symptoms (80% improvement or so) then it must be considered whether this really is PMR.
If the pain is well dealt with at that level then it is very unlikely to be fibromyalgia. Fibro isn't inflammatory and doesn't respond to pred, whatever the dose.
If it is dealt with, then you start to reduce the dose - but for some people it must be in small steps and gone about very carefully because they respond strongly to any change in dose. Some people notice even a 1mg change even at those high doses - so one of the slowed tapering plans we bang on about may help. Too many doctors (and patients) panic when they experience steroid withdrawal pain and think it is a flare. It may not be.
I would also have concerns about your sinusitis diagnosis. I was treated for that just before my GCA diagnosis. In fact A&E might be your fast track solution. I don’t understand your current doctor’s thinking. As explained by PMRPro.
Hi Sheffield Jane, thank you for your reply. I originally thought it was GCA, which I told my doctor . They did a CT scan of my head , which found the sinus problem. Still concerned about the throbbing pain I get in my temples, I’ll mention it to the Ear , nose the throat specialist , hopefully he can shed some light on it. My doctor is strictly by the book- bloods are good, shouldn’t have pain. Very frustrating .
I totally agree with PMR Pro. I started on in October 2018 with 15 mg , then 25 mg and then 30 mg to get sufficient pain relief. Then I reduced according to Dorset Lady’s taper ( I told my GP and rheumy what I was doing) . I struggled to get lower than 20 mg and my rheumy suggested methotrexate. I resisted but when I was struggling to get down from 15 mg pred, I agreed. Now I’m on 15 mg methotrexate weekly and reducing 8.5 to 8 mg pred daily.
I think you need a more knowledgeable doctor . Good luck !
Thanks Katiemills, I think they get stuck on what the text book says when they haven’t dealt much with PMR. She says what I’m on should be enough to stop the pain. Hence her thoughts that I now might not have PMR. I agree, I think I need a more knowledgeable doctor.
I started on 20mg 5 yrs, ago, I am only just down to 7.5mg after a few flares while trying to reduce too quickly. So don't let the specialist try and rush you to come off them.
Thanks Marcy47, I’ve decided not to go back to my current specialist. She’s so focused on getting me off the steroids that she isn’t seeing the big picture. She told me to use pain killers to help with the pain.
Shows how much she knows about PMR - there are very few people who find ordinary painkillers do more than take the edge off. They DO help with steroid withdrawal pain - but that is something rather different. Even opiods don't help in PMR.
Hi PMRpro, I agree, I told her that ( don’t think they like being told ) . She thinks it’s not pmr now because of the pain I’m still having. So wants me off the steroids asap. I think if they had it, they might understand. The steroids saved me, I could hardly walk or function before them.
I thkin defintiely get a new doc. are you in usa or uk? It is pain to change but until you find one that works I'd change. and stick with PMRPro advice!
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