Steroid resistant

[Vaggers]

Diagnosed with PMR end of July but have been steroid resistant on 15mgs daily, then intramuscular steroids gave no relief at all either. I really didnt realise that PMR could be so unbelievably painful. I have now been on Pred 40 mgs daily plus methotrexate since last Monday and pain seems to be almost under control. Has anybody here experienced steroid resistance? I am concerned to be on such a high dose of Pred but grateful to be almost pain free.

[HeronNS]

I'm glad you're getting some relief at last. However my understanding is that PMR responds to a moderate dose of pred and if it doesn't then the diagnosis of PMR should be reconsidered. Has your doctor run tests to rule out other conditions which can present with PMR symptoms?

[Vaggers in reply to HeronNS]

What other conditions can present as PMR? My doctor and consultant

have run loads of tests, scans etc.

*just getting used to using this forum, havent done anything similar before, hope Im putting the replies in the right place!

[HeronNS in reply to Vaggers]

It sounds like you've had a lot of investigation. PMR really is a diagnosis of exclusion. If nothing else turns up positive, then it's PMR! Try this:

uptodate.com/contents/clini...

[Vaggers in reply to HeronNS]

Excellent article thanks

[piglette]

It does sound as if you may have something else that reacts to steroids rather than PMR. There are several other things it could be.

[Vaggers in reply to piglette]

I have had so many blood tests, bowel screen, ovarian ca125 screen, sjogrens, lupus, chest xray, ct pet scan and still my consultant thinks PMR. My crp has ranged from 35 to 109 and despite my present drug regime I feel so tired and unwell and have lost a lot of weight. I am not sure what I should do. I thought steroids gave you a feeling of wellbeing!

[Hidden in reply to Vaggers]

I have read some stuff about steroid resistance and some people on the forum have had to start at higher doses... Up to 40mg. If I remember correctly the research I read looked at a couple of people resistant at 15mg and added mxt then. It does sound a big dose with mxt simply because it's a steroid sparer. That means it helps your body get the most out of the steroids you take so hopeful you can take lower doses of pred.

You do seem to have been tested for most things. When exactly was your worst pain... Time of day I mean. Did it get better during the day? Any other unusual symptoms? Inflammatory markers up/normal? Hopefully pmrpro will be along and the more info she, and we have, the more we can help. 🌻

[Vaggers in reply to Hidden]

My pain initially improved as the day went on and then became worse at night. I have been trying to sleep upright on the sofa as getting in and out of bed so painful. The pain has frightened me at times. I have 3 friends with PMR and none describe symptoms as severe as mine. However, fingers crossed things are improving on 40 pred/mtx. I can now sleep in my bed.

[Hidden in reply to Vaggers]

The night time time pain reminds me of the possibility of ankylosing spondylitis. Has anyone mentioned that to you? A couple of people who were members were checked for that as its more usual for pmr to cause pain and stiffness in the morning. It's an ai condition too with chronic inflammation.

nhs.uk/conditions/ankylosin...

[Vaggers in reply to Hidden]

Thanks for that. Will mention to my consultant. To be fair every concern I have expressed has been investigated if I asked for a specific test they have done it, ie myeloma for one.

[PMRpro Ambassador]

Did they go direct from 15mg to 40mg or did they try anything in between.

I refuse to call someone not responding to 15mg steroid resistance - it only works if you are on enough pred and that is commonly 25mg/day. Especially if you try to just carry on your normal activity level.

Do tell us more about your symptoms - timing and how they started you on pred.

[Vaggers in reply to PMRpro]

No they didnt go from 15 to 40. I was upped from 15 to 25, no response. Then intramuscular injection of 120 depomedrone, no response at all, then, a week later 120 mgs in gluteul muscle, no response, well maybe 2 days but not much relief at all. I was in so much pain my consultant saw me a week later (last Monday) & I had steroid injection in both shoulders, started 40 mgs Pred and Mtx. Since then i have been 94% pain free apart from occasionally my left shoulder . My consultant has always seen me promptly and did admit he had not really seen anyone quite so steroid resistant. Incidentally I have not developed the typical side effects like moon face and weight gain. The opposite in fact. All this does worry me, I hope i have the right diagnosis but on the other hand i dont know what else they can test me for.

Is the treatment regime curative or does it just free you from pain/stiffness until you become well again, however long that takes ? Thankyou.

[PMRpro Ambassador in reply to Vaggers]

Starting at the end - no, not curative. Like many autoimmune disorders it can go into remission - in fact far more often than most and the medical world regards PMR as a self-limiting disorder. Pred just manages the inflammation and, therefore, the symptoms until that happens, allowing a better quality of life.

This article gives an indication of the likely duration of management with pred. The times are maybe a bit extended - you have to reduce the dose of pred you were on once the a/i part has burned out so that probably adds some months to it all:

medpagetoday.org/rheumatolo...

but to be honest the figures do fit fairly well with what I have seen in 10+ years on the forums.

I got an excellent response to 15mg pred in under 6 hours - but beyond that I struggle to reduce even to 10mg. I also don't have problems with excessive weight gain apart from what is probably due to lack of exercise nor do I have any typical so-called pred adverse effects. I did while taking methotrexate which I found quite bizarre and I stopped very quickly. I also had a terrible time with methyl prednisolone.

I think doctors are just beginning to appreciate the variation in presentation - no doubt due to a variation in actual underlying causes. And that is probably why we struggle to get a diagnosis and the management is such a pain - in every way!

[pugrescue in reply to PMRpro]

I have GCA, not PMR, so maybe react a bit different. 6 months in cannot really say that I have had meaningful side effects of prednisone...started at 50 now 25. No moon face, no weight gain etc. But flared twice at 30mg, and started MTX 4 wks ago and your comments on that, I can definitely relate to. Bizarre fits it for sure! Just had my first CBC since dx (they have done ESR & CRP every 2 wks), and my WBC and neutrophils are really elevated when a side effect of MTX is quite the opposite....

[PMRpro Ambassador in reply to pugrescue]

Oh dear - it does fool them!!

[SheffieldJane]

Pred just deals with the inflammation, pain and stiffness. If it is PMR the disease rumbles away underneath until hopefully it goes into remission. Average time, around 6 years. Good luck with further investigations.

[katiemills]

I was ‘ steroid resistant ‘ and started on 15 mg then 25 mg then 30mg at which point I was pain free . The rheumy ran all sorts of tests to see if it was anything else but it wasn’t . He put me on methotrexate when I’d tapered to 15 mg because I was struggling to reduce my taper . I’m now down to 10and 1/2 mgs ( but hating the methotrexate!)

My son has ankylosing spondylitis and his pain doesn’t sound like yours . Pm me if you want to chat more .

[Noosat]

For what it's worth. When diagnosed I had unbearable pain in upper legs, I was put on 40mg for 3 days then down to 20mg. Both these helped a great deal. I stayed on 20mg for at least a month, probably a little more, then started tapering. In a little over 10 months, I started on 3.5mg 3 days ago. As I tapered, I had to differentiate between possible PMR pain and other problems such as osteoarthritis.