PAIN OR NO PAIN THATS THE QUESTION

[Harrywogan]

Sorry lovely people if this has already been posted,new phone and can be tricky my grandaughter just laughs at me,My friend asking me if iam pain free before I cut my pred and I couldn't give her a answer because I dont think I've ever been pain free as long as it's not to bad I just try and forget about it.any you lovely people the same .xx

[DorsetLady PMRGCAuk volunteer]

The ideal is obviously to be pain free, but realistically not sure that’s achievable for everybody.

The guidelines do say from initial dose you should get “at least” 70% relief...and then we say you are reducing to find the lowest dose that gives you the same relief as that.

Did the initial dose give you 100% relief?

In theory it should, because it’s higher than you should need on a daily basis. It’s doing two jobs - addressing the built up inflammation (pre diagnosis) and also the daily shedding of inflammatory substances.

My thought is that, if you aren’t completely free of PMR pain (and sometimes it’s difficult to know what is purely PMR and what are other issues) then if you reduce, you are more likely to flare...if not at current dose then further down the line.

But that’s just my theory.

[Harrywogan in reply to DorsetLady]

Thanks DorsetLady can only remember being pain free when at 40mg did make me feel like a young thing well until I passed the mirror lol. I did ask my Rheumatoligst when I had one if I should be pain free before I cut she said NO I have always had a sore neck well comes and goes or sore arm,but then I find if iam out in company and have a laugh there's no pain lol Take Care x

[DorsetLady PMRGCAuk volunteer in reply to Harrywogan]

Oh that’s nice of her! Might have a different view if she ever gets it.

[Noosat in reply to Harrywogan]

The 40mg for three days made me absolutely pain free, but a little head muddled, then dropped to 20mg. I am currently trying 1 and one half after a little over 2 years of tapering. I find that it depends on how much pain/discomfit I am willing to carry. I rely each day on an afternoon rest and occasional Tylenol dose. Of course if I have to go somewhere in afternoon I do not have my rest, but find that I do OK. Good Luck

[Harrywogan in reply to Noosat]

Thanks Noosat all good to know take care

[PMRpro Ambassador]

It all depends - whatever level of freedom from pain the starting dose achieves is a guideline and then you shouldn't feel worse at the end of a taper step than you did at the start of it in the context of PMR symptoms. Then you need to consider what is the source of the pain that didn't go away - or any new pains that may appear. Pred will mask OA pain for example and it often appears at lower pred doses. However - HeronNS will tell you about her belief that her returning symptoms were due to OA - until shown to be more likely to be PMR. It is really difficult to tell the difference so learning to know YOUR PMR and YOUR body is really important. Plus whether the pain responds to paracetamol can be helpful - PMR mostly doesn't, other things do.

[Harrywogan in reply to PMRpro]

Thank.for that it helps.

[Thelmarina in reply to Harrywogan]

I think age can be a factor too. At 74 with arthritis in the family I get stiff but it’s very different from polymyalgia pain which left me virtually a hermit before Pred. I walk and do some gentle yoga to loosen up which help hugely.

[Harrywogan in reply to Thelmarina]

Thanks Thelmarina,Ian lucky that way no arthritis yet,walk alot and swim alot (well when we can) and yes The pred is our way out of pain even tho we hate taking it,you take care iam for a good mug of TEA

[Harrywogan]

Thanks DadCue,you sound like me in many ways,I like when iam busy and never think of the twinges thanks again.Take care

[Fiddlersmum]

If only we could be, I'm 10 months down the line now and I can honestly say that, aside from the immediate relief from my initial 15 mg then raise to 20 mg I haven't been totally free fro pain, on good days it's lurking in the background, on not so good days, such as today, its stopping me doing just about everything. No amount of paracetemol, opiod painkiller helps. I do hope you're pain free soon. best wishes

[Harrywogan in reply to Fiddlersmum]

ThanksFiddlersmum 3 1/2 years in I cant say I've had no pain.iam very active but told off sometimes by daughter as to active and you I dont like it,swim 4 days a week,well when we could,and do a lot of walking Sooo just mayb i could cut it down a bit but love being active,the mind says iam25 and the body says dream on. TAKE CARE.

[Poshdog]

Taken pred 4 years and am on 4mgs now. Yes I do have some pain around neck and shoulders but can manage and want to keep at present level to enable adrenal glands to recover. A sort of trade off! Good luck on journey