Go back up or endure the stiffness?

[Toolmart]

Hi, I’m 68 years young and 8 years into my PMR journey and currently taking one milligram Pred daily. I’ve been down to 2mg or below for the last two years but I haven’t ever been able to get below a half . Both my GP and rheumatologist have said that I probably don’t have PMR anymore and recent blood test results support this. I always use the DS reduction method and usually reduce by only half a milligram @ a time. My reducing attempts are stopped by debilitating pain and stiffness in all my muscles and joints. My questions are…. Is the pain/stiffness that I experience caused by steroid withdrawal or are the steroids simply suppressing it? Might I have more success if I reduce even more slowly, maybe by a quarter mg @ a time?

I know that such low doses are thought not to be harmful and that some people never get off the pred completely. However if I were to put up with the pain and stiffness for a longer period, would my body eventually accept the lower doses or would I cause damage by not listening to my body and increasing the dose?

I would be very grateful for any help/ advice.

[SnazzyD]

When does this kick in after a reduction?

[Toolmart in reply to SnazzyD]

Hi SnazzyD, it doesn’t really kick in but the pain and stiffness will gradually increase as I gradually reduce to my next target dose.

[PMRpro Ambassador]

When doctors assert with such confidence that someone no longer has PMR I really would like to know their thought process to come to that conclusion. It can't be because "PMR only lasts 2 years". That is a myth, Nor can it really be on the basis of blood tests as they are not reliable. You need enough inflammation for long enough to trigger the liver to produce the proteins that lead to a rise in the markers,

Have you had a synacthen test to assess your adrenal function? Inadequate adrenal function can sore and achy muscles too. How long have you tried to ride it out? Is it really stable or does it improve or worsen over time?

[Toolmart in reply to PMRpro]

Thank you PMRpro, yes it’s most likely that I still have PMR (despite what the doctors say) , the pain and stiffness that I’m getting when reducing is simply the PMR rearing it’s ugly head again as I reduce below the dose needed to keep it at bay. I will learn to be more patient and remember to be grateful that the dose that currently keeps me symptom free is accepted as being relatively harmless. Many thanks for your wise and constant contributions to this site.

[HeronNS]

I was on pred for PMR for 8.5 years. Didn't stop taking it until I was reliably painfree. I had tried several years earlier to stay at zero but pain mounted up.

However my doctor has recently allowed me to take a low dose of pred again for an unrelated autoimmune skin condition as he understands my desire at my advanced age (77 and counting) to simply feel well and comfortable, and there is little to no harm to be caused by dosage under 5 mg.

[Toolmart in reply to HeronNS]

Thank you HeronNS, yes I’m going to accept that I need to keep taking a low dose for now. It would be nice to be off the pred completely one day but I must remember that there’s no hurry.

[HeronNS in reply to Toolmart]

You re very wise. Had I known what was awaiting me, and understood beforehand that pred was helping more than PMR I'd have stayed at 2 mg forever!

[Sharitone in reply to HeronNS]

That's interesting. I also have an unrelated AI skin condition, but was told that oral steroids do not have much , if any, effect on the skin. So I have steroid creams instead.

[HeronNS in reply to Sharitone]

Wouldn't be experimenting with pred if I hadn't realized that during the years on pred I'd completely forgotten about the occasional episodes with my skin that had occurred for literally decades before. That told me pred was doing something. In fact, during the before-pred life no one had ever suggested my problem might be anything more than dry skin (although I needed hydrocortisone ointment to deal with it); autoimmune was not in my lexicon for anything before PMR. I was better off regarding my skin before pred than I've been since about two months after I stopped last year, and was on pred at such a low dose for most of the PMR years it seemed possible that getting back to 2 mg might be effective again. Unfortunately it may not work without going back up to a higher dose for longer than I'm willing to try, but not giving up just yet. Five mg works, 3 doesn't.

[Sharitone in reply to HeronNS]

Thanks for the info. I'll keep it for future ref

[Louisa1840]

Hello Toolmart, you and I could be twins in that I have had PMR for nearly 8 years and am on 2 mgs. It's the stiffness that gets me after I have been sitting for any length of time and especially when I get up in the morning. I don't really have pain just unbearable stiffness...

I can understand that you wouldn't want to go back up with the steroids having got down to such a low dose but, at the end of the day it is your quality of life that matters. If going up to say 5 mgs a day would help then I would not hesitate......

[Toolmart in reply to Louisa1840]

Hello Louisa1840, yes , if not twins then we could well be related! I’m planning a big trip to visit close relatives soon and I was hoping to be off the pred before I set off , so may well have been optimistically pushing my dose down too much. My current flare has been a great reminder that I must be patient and accept a low dose for now, there’s no hurry …. but maybe one day…! 😉

[Cjcc]

Hello, I was on 2mg or below for a couple of years and I divided the 1gm pills into half then quarters for some months and eventually came off altogether. Even then I think it took about 18 months to feel PMR had "gone", with residual stiffness and sudden fatigue on occasions. It's now 2 years since I came off pred. I think my adredals are back to normal at last!Good luck!

[Toolmart in reply to Cjcc]

Thanks for your reassuring message Cjcc and sound advice.

[GCAsurprise]

Listening! I am at 2 mg and using the dead-slow taper method but am finding at each taper point I am extremely stiff. This is such a painful process! Am really interested how others managed!

[DorsetLady PMRGCAuk volunteer in reply to GCAsurprise]

Am really interested how others managed!

Very slowly. But we don’t know when you started and how you’ve tapered up to now.. so that may give us a clue of what to advise.

[Louisa1840]

Well, HELLO Toolmart! After your phone call just now it seems we are related - not twins but siblings. Just fancy that.......XXX