What steroid dosage did you start on? Did you find the right dosage?

Posted by abbeyc @abbeyc, Feb 5, 2022

Hello I am wondering what dosage of Prednisone everyone started on and how long (days) did it take to get complete 100% relief (if ever). Or how long did it take to find the right dosage? I have trialed 3 different steroid doses (with help from my doctors) for the past month and no success yet controlling all the pain 100% or determining the right dosage for me. Maybe I'm impatient.

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@linda7

My rheumatologist started me on 20 mg when I was diagnosed in August '21. I could feel it working within 6 hours and within 48 hours all symptoms were gone. I had no problem tapering to 10 mg over 9 weeks but after that I have had difficulty. My MD recommended that I drop 1 mg every 3 weeks. At 8 mg I had quite a bit of pain. It was hard to tell if it was years-old pain coming back, prednisone withdrawal symptoms, or the disease returning. I dropped to 7 as scheduled anyway and the pain continued but no worse. I decided to extend the time to 4 weeks, then dropped to 6 and symptoms improved. I can see that this business of tapering is an art rather than a science. I see my MD next month when he would like me to be at 5 mg. I thought of calling him for advice but in the end decided to just listen to my symptoms and do what felt right as long as I am not deviating widely from what he recommends. From what I have read the body generates about 7.5 mg of cortisol naturally, though it cuts back when the prednisone replaces it. So it seems logical to have problems decreasing the prednisone below that level, when the body has to start producing cortisol again.

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I'm at 5 mg on a 'cut back' program ----------- I have no energy ----- tired ---- does this sound familiar ??

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@wv54

I had a temple artery biopsy --- it came back negative

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So, were there other tests that confirmed the diagnosis? Thanks.

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@ripley

So, were there other tests that confirmed the diagnosis? Thanks.

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I went to my doctor first -- and he sent me to a rheumatoid dr. ---- the rheumatoid dr. ask questions regarding any eye sight loss - excessive floaters -- headache around the temple area --- she also ask if the prednisone worked -- I said yes within 24 / 36 hours ---- she said no doubt PMR and rushed to put me on the surgery schedule for the biopsy ---- the symptoms - also my sed rate had peaked at 100

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@wv54

I'm at 5 mg on a 'cut back' program ----------- I have no energy ----- tired ---- does this sound familiar ??

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Yes, I definitely have fatigue at 6mg, also old pain that I had before PMR. It feels like withdrawal from prednisone rather than PMR returning, but I'll see what happens on the next drop.

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@linda7

Yes, I definitely have fatigue at 6mg, also old pain that I had before PMR. It feels like withdrawal from prednisone rather than PMR returning, but I'll see what happens on the next drop.

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My doctor started me on 40 mg at the beginning of my PMR --- within 24 / 36 hours the PMR was gone - had so much energy -- I couldn't get my doctor to start cutting back due to my sugar being 300 + --- so, after reading several articles, I started cutting back pred. on my own -- cut 5 mg every 10 days due to my sugar levels ---- rheumatoid dr. said I was doing the right thing -- so, when I went to her, I was down to 10mg BUT she put me on Methotrexate 2.5 mg -- I take 6 pills on every Monday -- she also put me on a 1 mg of Folic Acid that HAS to be taken with the Methotrexate - her goal is to completely get off the pred. -- So, I'm down to 5 mg --- but, I have no energy - no strength and getting sleepy in the middle of the day ------

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@ripley

Can I ask what tests were used to diagnose your Arteritis? I am having headaches but my blood tests are all normal. Thanks.

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My GCA was diagnosed by quickly getting me on to 60mg prednisone after seeing the elevated Sed Rate. The symptoms were classic. Scalp,jaw,neck,temple pain. The drug responded almost immediately and that was the basis of the firming up the diagnosis.
Six years later I am still taking 5mg. It can be a long story I'm afraid. Be patient. Like the letter here a few letters back, I now don't know what exactly what I am treating. I call the aches and pains "old war wounds." When you've played soccer, tennis and golf for 65 years you can expect some pain. Now my CRP numbers seem to be low but the pains prevail.
There doesn't seem to be a gold standard for diagnosis of PMR or GCA.
With prednisone in our lives we have to know that we are considered immunocompromised.
This forum seems to be in denial of this theory. This would mean that our immune system may not be up to a safe level even after 3 covid vaccines.
So I am still looking for some expert to tell us. Are we safe?
Or do we all have to stay away from Grand children for ever.
Does anyone have a good answer to this?

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@golfbarmie

My GCA was diagnosed by quickly getting me on to 60mg prednisone after seeing the elevated Sed Rate. The symptoms were classic. Scalp,jaw,neck,temple pain. The drug responded almost immediately and that was the basis of the firming up the diagnosis.
Six years later I am still taking 5mg. It can be a long story I'm afraid. Be patient. Like the letter here a few letters back, I now don't know what exactly what I am treating. I call the aches and pains "old war wounds." When you've played soccer, tennis and golf for 65 years you can expect some pain. Now my CRP numbers seem to be low but the pains prevail.
There doesn't seem to be a gold standard for diagnosis of PMR or GCA.
With prednisone in our lives we have to know that we are considered immunocompromised.
This forum seems to be in denial of this theory. This would mean that our immune system may not be up to a safe level even after 3 covid vaccines.
So I am still looking for some expert to tell us. Are we safe?
Or do we all have to stay away from Grand children for ever.
Does anyone have a good answer to this?

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Hi Golfbarmie, your question is a good one. It seems unreasonable that grandparents will have to stay away from grandchildren forever. Both generations benefit so much from each other. I can submit your question to Mayo Clinic’s Dr. Poland who hosts a bi-weekly podcast that is published here on Mayo Clinic Connect’s podcasts: https://connect.mayoclinic.org/blog/podcasts/

Here is the most recent one:
- Omicron wave wanes, new variant arises https://connect.mayoclinic.org/blog/podcasts/newsfeed-post/omicron-wave-wanes-new-variant-arises/

Are your grandchildren also old enough to to have been vaccinated?

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@colleenyoung

Hi Golfbarmie, your question is a good one. It seems unreasonable that grandparents will have to stay away from grandchildren forever. Both generations benefit so much from each other. I can submit your question to Mayo Clinic’s Dr. Poland who hosts a bi-weekly podcast that is published here on Mayo Clinic Connect’s podcasts: https://connect.mayoclinic.org/blog/podcasts/

Here is the most recent one:
- Omicron wave wanes, new variant arises https://connect.mayoclinic.org/blog/podcasts/newsfeed-post/omicron-wave-wanes-new-variant-arises/

Are your grandchildren also old enough to to have been vaccinated?

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The little girls, 8 and 10, are between first and second vaccines but my status regarding immunity continues. My rheumatologist, perhaps in frustration with my questions said, "You're not immunocompromised!"
Though she has no way to tell. So I proceed carefully for the time being.
Thanks for your question.

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My first bout of PMR, (2002) I was started at 60 mg. For my second bout, which started 12/2021 (1 month after receiving Moderna Covid booster + flu vax) I was started at just 30 mg. Doc tapered me to 20 after just 3 weeks. I'm not sure it's a sufficient dosage. I wonder if the science around this has changed in the last 20 years, if the best starting dose has been reduced since 2002? Also, has anyone else had a flare-up of PMR or GCA after receiving flu vax? Or Covid vax?

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