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

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Getting my dosage back on track after having shingles

bunnymom profile image
13 Replies

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.

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bunnymom
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13 Replies
Rosbud profile image
Rosbud

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

SheffieldJane profile image
SheffieldJane

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.

bunnymom profile image
bunnymom in reply to SheffieldJane

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.

bunnymom profile image
bunnymom in reply to SheffieldJane

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.

yogabonnie profile image
yogabonnie

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 profile image
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 profile image
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 profile image
bunnymom in reply to Linny3

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

SheffieldJane profile image
SheffieldJane

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.

Daisychain12 profile image
Daisychain12 in reply to SheffieldJane

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

PMRpro profile image
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 profile image
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 profile image
PMRproAmbassador in reply to Daisychain12

Exactly

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