Getting my dosage back on track after having shin... - PMRGCAuk

PMRGCAuk

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Getting my dosage back on track after having shingles

bunnymom
bunnymom

A month ago I was at 5 albeit a bit shaky. Feeling very stiff and unwell so increased by 5 for 3 days. Had a blood test with increased inflammation. Rhuemy said go up to 7 and stop reducing. In the meantime I break out with mild shingles. So after 3 weeks at 7 feeling lousy I tried 3 days of 12. Felt better. Then tried 8 for a few days. Still not as well as I have been. Took one more in the evening and in a few hours felt much, much better. I had called Dr at 8 am with no reply so by evening I was ready to take matters into my own hands. So is 9 my body's best dose and I stay here for awhile? Then I do a slow reduction from 9 as usual, but drop by halves and not 1's? As we all say I hate to increase but I am very tired of feeling so lousy when I know I can feel better. Thanks for your help as usual friends.

13 Replies
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I have A similar dilemma, have just finished my first full

Week at 9.5 after having to increase because of A flare and am undecided do I rest here for A couple of weeks before attempting A DSNS to 9 ,I hope you get some answers very soon x

I think your plan sounds like a good one bunnymom, after all you have had a nasty virus. It is pointless suffering, it only gets worse.

I was actually trying to find a way to escape from my body for just a few days! I didn't realize how much better I was doing until I took a nosedive.

You know tho it's hard to go from 5 to 9 and go through all the adrenal gland process again. But that's the way it works I guess. I should be grateful my poor old body gets me around as it daily fights itself.

I think you are doing exactly the right thing..unless PMRpro says otherwise! Sorry about the shingles. I wonder, if now there is a new 2 series shingle shot that is NOT a live virus should we get it. I have a SED rate test tomorrow with GP and I will ask. Hope you are feeling back on top!!!

bunnymom
bunnymom in reply to yogabonnie

The original shingles vaccine listed pmr as a side effect. That's the vaccine I had gotten. Dr suggested I might want the new one and we agreed to wait awhile and see what the side effects seem to be. I don't want to sign up for another round of PMR😝

Linny3
Linny3 in reply to bunnymom

I never new that about the shingles shot. I had one shortly before being diagnosed with pmr. The maddening thing is no one told me and the one I had didn't work. I think

I m going to go out back and have a tremendous screaming fit. Yikes how much can one person take!

bunnymom
bunnymom in reply to Linny3

Well of course we never really know the cause but I certainly am not getting another vaccine.

Maybe your new slow taper will accommodate the Adrenaline issue? At 6 mgs my insomnia is back, I think it’s my Adrenaline this time - fits and starts - swooning and buzzing.

Jane I have been wondering about you. Is this the worst of it? I wanted to know if you are coping. Xxxxx

PMRpro
PMRproAmbassador

The whole point of being on pred is to have an improved quality of life - if you need 9mg, you need 9mg. Especially if you have another illness going on at the same time. And the pred will help the shingles too...

Daisychain12
Daisychain12 in reply to PMRpro

Thank you so much for always reminding us of the benefits of pred. We so often seem to be trying to race off it when that is NOT what is needed. Xxxxxx

PMRpro
PMRproAmbassador in reply to Daisychain12

Exactly

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