The last month: Diagnosed PMR Nov. last. Now... - PMRGCAuk

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The last month

barny49
barny49
17 Replies

Diagnosed PMR Nov. last. Now starting my last month at 1mg pred. Everything has went smoothly. Hopefully I will still be as well at end Sept. Will be glad to get off Alendronic acid. Hope everyone is making same progress as I have.

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PMRpro
PMRproModerator

What a good journey you have had thus far and I wish you all the best for this last leg.

However, sorry to pour a drop of chilly water on you - but you wouldn't be the first to find 1mg was enough to keep the PMR under wraps! So do this last 1mg slowly and be aware if there is a return of symptoms - I do hope there isn't and you never need us again!!!!!

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borednow
borednow
in reply to PMRpro

I'm hanging grimly on to my 1.5mg and may probably stay there for a very long time, if not forever!!

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barny49
barny49
in reply to PMRpro

1mg would be a small price to pay although I sincerely hope to ditch them altogether. I have learned a lot since diagnosis so will be more aware if a return of symptoms. I read in another thread about skin thinning. I have noticed little red blotches on my arms and just a couple of days ago a simple touch of something caused bleeding where in an earlier time wouldn't have occurred. I didn't even know it was bleeding until I discovered a trail of blood running down my hand.

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jinasc

10 months, that is a first for me in 12 years.

Did you need AA, did a Dexa scan say you did - or were you just prescribed it and took it without asking. If so, I would insist on a Dexa scan now, you either need it or you don't and if your bones are within the range, where you do not need it then you can stop........otherwise you have to either stick with it or look for an alternative on the Royal Osteoporosis Society website theros.org.uk

Please remember not cured, just remission.

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barny49
barny49
in reply to jinasc

Like you say, just prescribed it and took it and didn't know a lot about it, for example knew nothing about dental problems. Dexa scan was never discussed and again knew nothing about until arriving at this website. A little disappointed to read only in remission. Thanks for the reply.

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jinasc
jinasc
in reply to barny49

Yes, but a researchers are working hard to find a cause, once that is found a cure. Auto immune illnesses, of which there are many, are so difficult.

It is best to be aware that it is remission, you know the symptoms now. With a bit of luck and a fair wind...it will never come back. Just do not go mad and do everything you could not do before. Remember your body has taken a battering. Good health is wished.

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Rosina1871

Well done and good luck

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SheffieldJane

I salute you as you fly past me ( 3 and a half years, on 4 mg).

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barny49

My goodness, three and half years. That's a long time!

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Hidden
HiddenAmbassador
in reply to barny49

The median length of treatment with pred for PMR is 5.9years. Even the broader literature mentions 2 to 3 years. SO if you are in remission you are one of the lucky ones who do so in 12 to 18mths. I think it's 1 in5 that do.🌻

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barny49
barny49
in reply to Hidden

I don't know if lifestyle would have anything to do with it, I do keep as active as possible walking some everyday. Before I started treatment I could barely reach out to close the car door, the simplest things were so difficult. But I kept on walking anyway. Thanks for input.

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Hidden
HiddenAmbassador
in reply to barny49

I will keep my fingers crossed for you. We like a happy ending! It gives everyone hope.

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SheffieldJane

This disease is totally unfair. The forum has athletes,

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lemarie1

VERY NICE!

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Gary1310

Hi..I am right behind you. Diagnosed last January. I am now at 6 mg., reducing 1 mg every 2 weeks. I seem to be doing well.....fatigue is my biggest problem. Naps are now a necessity. Maybe a slight twinge of old pain in arms but not a problem.....I continue with the taper. Walking is a problem.....I wobble along.

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barny49

Hello Gary, my diagnosis was in November '18. Reductions were on a monthly basis. Hope you continue "doing well" Good luck.

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barny49

I'm back to report that I increased dose from 1mg to 5mg. I had carpal tunnel problems when I started treatment for PMR. Paid £500 (approx) for steroid injection. The carpal tunnel symptoms were returning and went away when I started treatment for PMR.

Now that I was down to 1mg the carpal tunnel problem re-appeared, I have increased to 5mg and hoping to see GP this morning. I am on waiting list for surgery, I inquired private cost of surgery, about £1,100. So far this is the only part of PMR to return. Fingers crossed.

So it looks like this disease is going to be hard to get shake off

Just to clarify, carpal tunnel syndrome was present before PMR diagnosis.

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