Back again - going backwards!

[Bulwark091273]

Have had PMR since 2008 and moved from prednisolone to methotrexate and was down to 7.5mg in June this year and reducing to 0mg, but my world imploded and I have been steadily regressing and am now back to 12.5mg but no relief....hands have also become arthritic!! Pains across back and leg muscles (front and back). Loss of sleep due to bad pains through pelvic girdle at night. Clutching at straws as to what next; am thinking of Hyperbaric Oxygen Therapy. Doctor says I am unique for having it so long (lol) great sense of humour!!! Any thoughts, words of wisdom from fellow long term sufferers, please...….am a very young 70+

[suzy1959]

You are certainly not alone! I have had PMR since 2012 and never managed less than 10 mgs. without flaring either! My wonderful Rheumy often has to reassure me that I am not alone- he probably gets all the difficult cases but has many other patients in this annoying, frustrating position. I am 59 and my hands, knees and hips are all arthritic too now. May be worth an x-ray of your hips in case of arthritis? For pain at night I use co-codamol. It does make me drowsy. I often struggle to sleep, but Amitriptyline has helped with that too.

[PMRpro Ambassador]

Tell your doctor you aren't that unique - I've had PMR for 14 years and counting! It is said that about 5% of patients have it for a very long time, sometimes for life, and I know 3 or 4 on the forums. Of us all I think I probably have fewest problems - BUT I refuse to comprimise on pred dose. I take what I need and at present am back at 15mg because of yet another flare - they happen ever 2 or 3 years and last a good 4 or 5 months before I can get back below 10mg.

Do you mean you added methotrexate to pred or switched? If you have PMR mtx isn't going to replace pred - don't care what any rheumy alleges!!

And your back pain at night - when? Earlier in the night or typical PMR time about 5am? Has your doctor considered it might not be PMR?

Theoretically hyperbaric oxygen therapy should help - I discussed it with someone at an "oxygen" meeting a few years ago but as far as I know no-one has looked at it. And I have no doubt it is expensive!!! Not to mention not available everywhere.

[Bulwark091273 in reply to PMRpro]

Thanks for your reply. Pain is always worse when lying down with the pelvic area tending to wake me around 0300. I had trouble coming off prednisilone a few years ago so they used methotrexate to wean me off and that is my medication currently. I do have a Hyperbaric Oxygen centre about 50 miles distant and expense seems reasonable. Will report back if I go that way...........anything would be an advantage at present.

Kind regards

[PMRpro Ambassador in reply to Bulwark091273]

I would also ask my doctor to do some imaging to rule out ankylosing spondylitis - it can present almost identically to PMR in the early stages of late onset AS. However, pain developing at that time of night is more likely in AS than in PMR so it makes sense to be sure. The fact that mtx helps also suggests it may not be "just" PMR.

[Bulwark091273 in reply to PMRpro]

Thanks for your reply. I was switched to Methotrexate and am now at 12.5mg (again), but I can't say I believe it is very effective on me. Interesting point is that my ESR has only shown at 6, 9 and 6 over the last 3 months having been 2 for previous 9 months. However, my current pain levels are reminiscent of when the whole thing first started all those years ago. Does it suggest I have something else apart from PMR? Be interested in fellow sufferers comments?

[PMRpro Ambassador in reply to Bulwark091273]

Post this as a new thread - then more people will see it.

[SheffieldJane]

Oh poor you! What caused this massive setback?

[maria40]

I've had PMR for 18 years and GCA for seven. I have struggled to get to 8mg where I am now and am quite resigned to the fact that I may never get below 5mg. Arthritis is also now attacking me in back, hands and knees. I'm going to ask my GP again for a synacthen test but suspect I will be told to wait until I'm down to 5mg. I reduce really slowly and am always alert for flares ; especially GCA. I don't think anyone, least of all an experienced GP should put an average time limit on PMR/GCA.