Just a note to say thanks: After six and a half... - PMRGCAuk

PMRGCAuk

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Just a note to say thanks

10 Replies

After six and a half years, my Rheumy tells me that the PMR is gone, and true to say, virtually all the pains around my neck and shoulders have diminished. CRP and ESR are normal.

But getting off the Pred is a real so and so. Down to 6 from 15 and counting. So, I am now leaving this group, but wish to thank all of you nice people for the incredible support which has been there for all, and also in being able to learn so much about this ailment, which the professionals don't seem to know.

Thank you one and all. You have been a great help.

10 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

You don’t need to leave completely, do pop in occasionally to let us know how you are…you may find you still need our help. Hopefully not, but one never knows.

Good luck.

SheffieldJane profile image
SheffieldJane

I am glad you don’t need us but the door will always be open. Enjoy your life!

Koalajane profile image
Koalajane

Hope things stay good for you and that PMR does not return. Looks like you must be from near me as I am in Bayston Hill. My best wishes to you

jinasc profile image
jinasc

I am curious, how does the rheumy know it has gone? BTW into remission, there is no cure at present, just remission.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply tojinasc

Crystal Ball 😳…..or very, very clever!

jinasc profile image
jinasc in reply toDorsetLady

Might be crystal ball but methinks not clever. If clever s/he would be paid a fortune and given a knighthood. I would even nominate s/he. 😉🤓

piglette profile image
piglette

Be careful, being at 6mg with normal inflammation markers does not necessarily mean that the PMR has gone into remission. Don’t be disappointed if you find the PMR may still be lurking. Good luck and hope that you have said goodbye to your PMR.

PMRpro profile image
PMRproAmbassador

Hum. Here comes the party-pooper. Sorry ...

You are still on 6mg pred? That is a VERY long way from being off pred and there being no return of symptoms - people may be well controlled and no measurable inflammation n as little as 1mg. All it means at present is that 6mg is plenty to manage the inflammation. Not that the underlying cause of the PMR is totally dead and biried, just that it is chugging along at a low level. There is no way of knowing it has gone except getting off pred altogether and there being no symptoms for a long time.

powerwalk profile image
powerwalk

Best wishes. Let us know how you get on.

Pixix profile image
Pixix

Good luck & well done! Sadly, my problems started at 4mg, & trouble since then has been greater than when at 4mg to 16mg! Hope you fare better & I can join your ‘ranks’ soonest!

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