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Hello all
If anyone recalls I had been reducing pred for some time and stopped it altogether about 3 weeks ago or so. Saw my rheumy but had not yet done a new sed rate. I had been having increasing stffness\pain as well. He advised to wait a week to see what it was (I supposed to make sure all or most of the pred was out of my system). Well I got it done and it jumped from 4 to 25. I guess the PMR devil has either returned or perhaps never left!!! Jeff

Han on in there  sed rate is normally half your age or below 25-27 which is what most rheumy's in UK say. What was your CRP?

Sometimes it takes quite a while for things to settle down.  When you go back on  - make sure it is the lowest dose to control your pain and then slowly slowly reduce.   When coming off pred it can take up to six months for  your own adrenal glands to kick in and make your own steroid.   That is why once you are on 5mg and reducing down its best to take a 1 mg drop every three months.

Good lUck and I hope its just a blip.  
 

Hi Jeff

I have been off of pred since last Oct. (I think) and my Dr. is still testing the sed rate and last visit it had jumped up to 25.  She said it was not a big deal but I was sent for more blood work.  She is afraid the PMR may come back so is watching closely.  Mrs. UK has it right on so is a good lead to follow.  Even if PMR is back for a short visit, he left once so he will leave again.

Take care.

 

TeedOff2009-04-03 13:48:20Thanks - I've decided not to return to pred. and "tough it out" . CRP hasn't been tested since I was dx'd 3 years ago. Sed rate (I've learned is not that bad -- I've hit 61 in March!! so 25 seems ok now).Rheumy was a bit irritated that I changed my mind!

jeff
Ok
now my sed rate has jumped again-- to 71! Told my rheumy I still wanted to be off pred. He's pushing for that or methotrexate and has some concern about GCA (he apparently does not believe any blood work othr that sed rate is useful. I frankly don't want either pred or methotrexate but if the stiffness and pain don't go away I not sure what I'll do. I've also lost nearly 30#s since stopping pred - thinnest I've been since my 20's! Rheumy says its because I stopped pred.
fencer

visit www.pmr-gca-northeast.org.uk and read Professor Dasgupta's papers on PMR.

I can believe you don't want pred or methotrexate and there is another type of drug that is being discussed and it being used by one person I know who is  trying it out but she is older and as we get older it can be worth a gamble. 

Visit this site  - scroll down and read every bit of information and discussion about LDN

http://www.arthritis.ca/open%20forum/boards/polymyalgia/default.asp?s=1

However if you have GCA do not chance it at all.  Sight is too precious to be played with.  CRP is a better indicator or GCA than ESR.

Yes you shed the weight when you stop pred  - but did you stop quickly?  Tapering is advised so you adrenal glands can kick back in.

 PMR goes away when it wants to  and it comes back on its own as well.   It also depends on what quality of life you want with constant pain or taking pred.
fencer

ps  - google ldn as well.

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