what’s next: Hi all. Diagnosed with PMR 5 weeks ago... - PMRGCAuk

PMRGCAuk

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what’s next

Kuipersr2 profile image
15 Replies

Hi all. Diagnosed with PMR 5 weeks ago. Prescribed 20 mg of prednisone. Just received my follow up lab results. C-Reactive Protein dropped from 39.6 to < 3.0. Sedimentation rate from 18 to 6. See my GP on Monday to go over this. What can I expect? Commence prednisone tapering? If so, what are your opinions on process, -2.5 monthly until I can get to 10 mg. Appreciate your input and opinions. Thank you.

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Kuipersr2
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15 Replies
PMRpro profile image
PMRproAmbassador

Yes - the inflammation seems to have been cleared out so it is time to start on the tapering journey. Just remember you are not tapering relentlessly to zero - you are titrating the dose to find the lowest effective dose for YOU. And that varies a lot.

Not more than 2.5mg down to 10mg but you might find even that is a bit much as you get towards 10mg. But you do have to try it once - if it is too much you go back to the higher dose, regroup and make the step smaller. There is a lot of info about tapering in the FAQs so that is all worth a read.

Kuipersr2 profile image
Kuipersr2 in reply to PMRpro

Thank you very much for your input. I will be conservative with the tapering process.

Theadmiral profile image
Theadmiral

I was diagnosed a few days prior to Christmas last year. Began with a CPR of 95 and ESR of 67. Reduced to 15mg 4 weeks later and CRP was then 1. The following month reduced to 10mg. After a devastating diagnosis for my husband of a very rare form of (terminal) multiple myeloma, which caused us some considerable stress along with the new regime of chemo and twice weekly blood tests for him, I am now about to start on 5mg. Of course I am very keen to get right off prednisone as I am concerned about the side effects. There are some on this gorum who would say that to reduce by 2.5mg is too much but until you try you don't know if it will be successful. Good luck.

Kuipersr2 profile image
Kuipersr2 in reply to Theadmiral

Thank you for sharing your experience. My thoughts go out to you and your husband.

yogabonnie profile image
yogabonnie

Hi! First I would take a long look at the FAQ on the right side of the page. Everyone has different tales to tell. I started 5 years ago at 15mg. and today am feeling the pain at 1mg after dropping from 1.5 3 days ago. Not sure I should be here. If the pain continues I will have to go up to 2mg. again. In any case. there are flares if you hurry too much. I lost a whole year trying to get back to where I was for a long time once. Everyone here is wonderful and there is a slew of information. Do what you can. Take things slower than you used to but keep on keeping on! Good luck to you. where in the US are you?

Kuipersr2 profile image
Kuipersr2 in reply to yogabonnie

Thank you so much for the advise. I will take it slow and be conservative with the tapering process. I reside near Grand Rapids, MI. How about you?

HeronNS profile image
HeronNS in reply to Kuipersr2

Yogabonnie's story is similar to mine. Seems like somewhere in the very small single digits works for us, but a half mg less doesn't. Who knows why?

yogabonnie profile image
yogabonnie

I am in St. Paul Mn. but have family in Hopkins, Mi. Not so far!

Kuipersr2 profile image
Kuipersr2 in reply to yogabonnie

Fellow cold Winter folks! Nice talking with you.

MiloCollie profile image
MiloCollie

along with tapering the pred think about your lifestyle too. If you feel better don’t DO more because you feel good. You really need to pace yourself and try and stay calm. Rest and rest again. You’ll get used to the journey. On this site you’ll get all the answers and support you need xxx

Kuipersr2 profile image
Kuipersr2 in reply to MiloCollie

Thank you so much for your input. I have to make sure to not push myself and get plenty of rest.

PMRpro profile image
PMRproAmbassador in reply to Kuipersr2

Exactly!

HeronNS profile image
HeronNS in reply to Kuipersr2

On the other hand, some activity is good for you, especially if you can get out in the open air. At the least, a daily walk.... And maybe some yoga too?

Kuipersr2 profile image
Kuipersr2 in reply to HeronNS

I walk daily and do light weight workouts

HeronNS profile image
HeronNS in reply to Kuipersr2

Excellent. it's important to keep the muscles working as pred can (not inevitably) weaken us and make us more prone to injury.

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