I'm having a problem with buttock pain which is a real nuisance.
I started 10 mg pred and 15 methotrexate in Feb 2020 (mtx from outset, prescribed by Rheum as GP wanted to minimise pred dose due to previous health issue). I tapered the pred and by October was taking 5.5 / 6. GP was happy with this. I had some fatigue throughout but it was manageable and I don't know if it was caused by PMR or mtx - or ageing, as several of my non- pmr friends reported taking afternoon naps.
In October I had telephone appointment with the Rheum, who seemed shocked that I was still taking pred!! I quote "the methotrexate is to replace the pred.......you should be able to get off the pred.....etc" He said he would write to GP to increase the mtx to 20 mg and I should continue to reduce pred.
By end Nov I had reduced pred to 5mg and felt fine. Then, the GP received the Rheum's report letter and in December I started the increased mtx 20mg and things started to go awry. I started to get sometimes overwhelming fatigue, and fairly severe deep-seated pain in coccyx area. The coccyx pain has subsided but I now have very sore glutes, quite disabling, and still fatigue. No injury or strain that I'm aware of. I now have almost no neck / shoulder pain at all.
Could this be caused by increased mtx, as I have read that it can cause joint and muscle pain. Or is the 5 mg pred dose not quite enough and has caught up with me? Or something else - I have read PMRpro's posts about myofascial pain and piriformis pain and wonder if it could be that.
Would be very grateful for suggestions....
Written by
Melti
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Buttock pain in PMR is often due to piriformis syndrome - does it fit? I see you are already wondering that.
I hate to disagree with the rheumy, but mtx does NOT replace pred if the diagnosis of PMR is correct. When I took mtx I had worse joint and muscle pain than I had had with PMR before I was put on pred!! The fatigue was unbelievable! That was enough to put me off very quickly. It does help some people - but I have yet to meet someone for whom it REPLACED pred. I suspect you have touched on all the contributors: too little pred, mtx and piriformis syndrome!
Than you PMRPpro for responding so quickly, and on a Saturday night! I'll look up the exercises for piriformis. I have found that paracetamol does take the edge off it. Apart from that, I'm not sure how to proceed - would like to go back to 15mg mtx but would I have to get the rheum to ok this? Also a little bit more pred for a bit?
You may well have a problem with this rheumy if he is so convinced that mtx will replace pred. It would if it was an inflammatory arthritis, but PMR isn't one ...
I'd have thought you could adjust the mtx dose with the GP but the rheumy isn't going to like it is he? The GP can't prescribe the mtx to initiate it.
I'm sorry to hear you are going through non-metaphorical pain in the posterior portion!!! Thank heaven that we can turn to the forum....I'm about to embark on tapering again! The experience available on the forum is the most comforting and empowering guide to work with the doctors and be assured that we are not mad when our bodies disagree. I hope things improve. 💖
I think it is early days to come off pred after less than a year. I am in my 7th year of pred reducing by half a gram with the help of meth. I have to come off meth every time my liver function goes up. Get regular blood checks
Unfortunately I had a rheumy that insisted I come of pred and just be on mtx I had 8 months of awful pain in the end when rheumy wasn’t listening to anything I said I went back to gp and begged him for pred which he gave me I no longer see the rhuemy and stay with gp
I wish I knew what makes them think it REPLACES pred - I can accept it may help reduce for some people but that is as far as it goes. It is almost as if they don't believe their own diagnosis and think it might be inflammatory arthritis. OTOH, there are some who obviously think that PMR is beneath their attention ...
The ones at the top do - but the everyday guy at the frontline doesn't really. Juniors take on what their superiors do, often without thinking. And once the ones at the top develop a theory, even do a study and publish, each thinks their own version is better than others and the lower echelons never read the papers. I've read more PMR papers and discussed it experts more than most GPs will have for example. Plus here on the forums we exchange experiences - we KNOW that loads of people have x, y or z as a problem but since it isn't in the very general textbook articles, as far as they are concerned it isn't so.
Ok I’m on 5mg indefinitely I increase when I need too i am 6 years on with pmr although the down side is I now have pred induced diabetes and have to take metformin .
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