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PMRGCAuk
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Update and ESR elevated

Since getting great sleep from using CPAP I have felt so much better so my slow down method went a bit faster from 14 mgs of prednisone to now 10 mgs. I have a slight temporal headache but otherwise feel so much better. Have not had lab work for 3 months and had ESR done this week it went from 14 to 31.

I am going to go back to 12 mgs and see if my headache settles down I have no vision problems except for pressure pain in my right eye. My eye physician says it is from the prednisone. The pressure was up to 26 and it is now down to 22.

I am so weary of this.

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I am sorry to hear your disappointment. You sounded so pleased with your progress, and with reason! How was your CRP? Also elevated?

I had ESR of 31 for years and it was considered normal, pre PMR, but my CRP was in the low end of normal range.

Let's hope this resolves quickly and you can return your taper progress.

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Hi Hindags, I just wrote to my doctor asking for the CRP test. It was slightly elevated three months ago at .84.

I believe my doctor and I were finding my labs were so normal mostly that we do them now if I have symptoms or a flare. So my last tests were in March.

I had asked for the ESR last week and normal is 30 and I am at 31 but my ESR is typically around 13 or 14.

On the other hand I love my new apt and have joined in on a few clubs and am starting a new class next month on my stamp collecting hobby. I also am the caller in Bingo now because I have such a booming voice lololo.

So Iam not complaining just whining a bit. If it was just the PMR I wouldn't be so concerned but with GCA I do worry about my sight and the slight headache bugs me with worry.

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Hi Lin, lovely to hear you're nicely settled in your apartment. But sorry to hear you're feeling a bit weary. Don't know if this will help but I have really decided to go sooooo slow on my reduction even if I'm feeling good. I was back up at 15mg back in Jan/Feb, I'm now down to 9.5mg. I've sort of got into a routine of a reduced dose of 0.5mg a week for about 3 weeks then stay on that dose for another 3 weeks before reducing again. So basically 6 weeks to come down 0.5mg!! Took me a long time to realise that this thing cannot be rushed and I am, at last, in the right frame of mind to do it. I'm supposed to be staying on 10mg for a year but if you see an earlier post of mine I had a bad appointment with an awful rheumy..so I'm basically doing my own thing. I'm due to see my own rheumatologist in a couple of months...I hope!!! It didn't happen at the last appointment :)

If we can't whine on here then where can we??? Hope the 12mg works for you, it sounds like you definitely need it. Hope you feel better soon. Take care.

Linda

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Dr assistant called she ordered new lab so will run off n get it done.

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Please do not apologize for whining. Your positive attitude, being grateful for the good in your life despite the ups and downs of the GCA, is a great reminder.

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Aren't there machines great hubby fitted and then instructed how to use it on24th May . Knock on effect is great I sleep better then I have in my life.

Used to go up at midnight read settling down at 1am with world service,for company then feel Pete getup to bathroom 4+times a night Change been going up 11pm Pete only getting up once if that I wake up feeling rested

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I love how my hose swivels on top of my head. I hardly know it is there and whoopee pee being the key word I don't wake up and don't pee in the night. I would normally say to myself well you're awake might as well go so it doesn't wake you up... I really didn't have to go. Also my machine is super quiet.... I drop the nose band down to see if it is working and whoosh it is on. It scared my cat the first time I did it.

PS I am having pain where I think my pancreas lives. I do have gallstones so it seems I have pain on one side or the other... Can't or should say they won't take out my gallbladder until I am way down on prednisone.... What fun....

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But it does all sound promising! You will get there!

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hello there Lin

I would be a little skeptical with a headache that feels like GCA and a raised ESR. Norm was 15 and now it's 31 it's really a 16 Point difference. Not looking to burst your bubble but I would air on the side of caution. Be aware of your symptoms. If it's not a GCA headache then it could be just the steroids.

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Hi Nap1,

It doesn't burst my bubble and I am getting jaw, sore scalp...

Last go around I made it to 7 mgs basically ignoring any nigglings of pain.. Ended back up to 20 n going down 1 mg at a time.

I have to admit that 12 is not helping so will go back to 15 and hold there to see if it settles down.

I don't want to keep yoyoing up n down.. But the one thing I have learned is my body is the one in charge n I listen most days..

Thanks for your thoughts it helped me..

Can't have much fun with my hobby of stamp collecting if I am blind...

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