Wondering if anyone the same as me.: Since cutting... - PMRGCAuk

PMRGCAuk

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Wondering if anyone the same as me.

Harrywogan profile image
7 Replies

Since cutting pred to 3mg iam feeling very low, is this a normal thing iam putting I down tothat and just getting on with everything.x

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Harrywogan profile image
Harrywogan
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7 Replies
PMRpro profile image
PMRproAmbassador

Most likely your adrenal function lagging behind a bit. How big a step down are you doing? Should only be 1/2mg by now - and using a slowed taper can make it a bit less exhausting, be patient, not every month, every 2 months would maybe help.

Harrywogan profile image
Harrywogan in reply to PMRpro

Yes Ambassador iam cutting 1/2 every8 weeks x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Have a look through this post re adrenals - might help, and as PMRpro days, slowly, slowly does it -

healthunlocked.com/pmrgcauk...

Harrywogan profile image
Harrywogan in reply to DorsetLady

Thanks DorsetLady iam dropping 1/2mg every 8 weeks,will have a look.

PMRnewbie2017 profile image
PMRnewbie2017

Are you using the DSNS method? Perhaps you could try this, I have found it helpful. For the first 2 weeks I repeat the schedule before reducing to 3 doses of the new dose per week. ie Wk 1 is 2 reduced doses, wk 2 is same as week 1, week 3 is 3 reduced doses. I then asses whether or not I will repeat wk 3 or continue to reduce. I am reducing by 0.25mg in going from 3.25mg to 3mg. Having had failed attempts in the past I now go very cautiously. Once I get to 7 days of 3mg I will stay there for a month at least.

Harrywogan profile image
Harrywogan in reply to PMRnewbie2017

Thanks newbie iam cutting 1/2 mg every 8 weeks x

Raven1955 profile image
Raven1955

I have recently gotten down to 3 mg after 5.5 years dealing with PMR. Over the last couple months I find that if I try to push to hard with my work or other things that I can become exhausted and "feeling down" easily. I mentioned it to my rheumy last month and he felt that it was the adrenals taking their sweet time coming back to life. In the meantime I pay close attention to not pushing myself too hard. If I am careful about it I find I have fewer issues with being tired and feeling down. As always, the dance isn't just about dosage.

I will try to work towards a lower dose but am certainly not in a rush and neither should you be. Yes we all hope to get down to zero dose some day but more importantly we don't want to have a flare and have to go back up to 10 mg a day or worse! Remember the PMRpro mantra: "the goal is the lowest EFFECTIVE dose".

My current rheumy (#4) told me that he has a couple patients that couldn't get below 2 to 3 mg without flaring and he urged them to "hold" at 3 for many months before trying to lower again. He said he would have no issue with a person taking 3 mg for the rest of their life, as the side effect issues are minimal at that low dosage. But one still needs to get the adrenals behaving at some point. The first year after I had PMR, someone told me that it's like learning to dance but the dance is always changing. They didn't tell me I had to dance the Watusi!!!

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