I keep relapsing when I try to get off prednisone

Posted by yeb @yeb, Jun 22 1:06pm

I was diagnosed with PMR in 2015. I keep trying to get off prednisone but every time I get to 4mg I relapse and have to go back to 15 or 20 and start over. Very discouraging. I want my life back. I have tried weekly methotrexate with the prednisone but it does not seem to help. Any suggestions would be greatly appreciated!

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@marid57

Google "Dead slow taper."
It is a tried and true method for getting off prednisone for many. It takes quite a while but seems helpful so far for me. I saw it on the PMR support group on FB. Good luck to you!

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I haven't ever found any research study that says this method works any better than any other slow tapering method. It is a "slow tapering method" so there is nothing wrong with it. I have my doubts about whether it is any better than any other slow tapering method for getting off prednisone.

I showed this method to my rheumatologist once. She said I shouldn't believe everything I read on the internet. Since she was writing my prescription for prednisone, I had to go with what she recommended.

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I'm sure there are other ways of dealing with prednisone tapering. I only offered this as a suggestion subsequent to a few other failed efforts on my part.
Good luck to you!

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I have finally reached zero prednisone starting today ( 20 weeks starting at 10 mg ) As I tapered off this time I started kevzara The pain I have now is different. My medial knees my butt cheeks and neck but not scapular. I cannot get up from the floor and climbing steps is difficult due to week legs My blood test this week dropped to 2.8 from 3.4 two weeks ago 4 weeks ago 2.4 and 6 weeks ago 3.8 for WBC In the past when I tapered off prednisone and my PMR returned my sed rate increased. Right now my pain is different and my sed rate is < 1 I have gained weight. I am afraid dr will tell me to stop kevzara due to low WBC I really was hoping my weight and most pain will decrease when adrenals start working and produce cortisol
Hope the call from dr will not stop Kevzara

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Before prednisone my blood pressure was consistently 120 over 80 rheumatology said it was high 6 months after being on prednisone but didn't suggest monitoring i have just stopped prednisone after 2 years tapering off 20mg was an endurance test now my blood pressure is between 144 and 150 over 90 to 100 and I have been told I have to monitor it I suspect it is the cause of the headaches. I wasn't given any information about the side effects of prednisone other than you will gain weiught and it will affect your sleep, it did so much more than that and While I appreciate it is a life saving drug it has done me more harm than good. I am hoping that as my body adjusts to not having it my blood presure will return to normal.

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@victoriab

Before prednisone my blood pressure was consistently 120 over 80 rheumatology said it was high 6 months after being on prednisone but didn't suggest monitoring i have just stopped prednisone after 2 years tapering off 20mg was an endurance test now my blood pressure is between 144 and 150 over 90 to 100 and I have been told I have to monitor it I suspect it is the cause of the headaches. I wasn't given any information about the side effects of prednisone other than you will gain weiught and it will affect your sleep, it did so much more than that and While I appreciate it is a life saving drug it has done me more harm than good. I am hoping that as my body adjusts to not having it my blood presure will return to normal.

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Be sure to monitor your blood pressure!!! I was not doing this and I had a stroke (brain bleed). Now I take a BP reading twice a day and adjust meds accordingly.

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@victoriab

Before prednisone my blood pressure was consistently 120 over 80 rheumatology said it was high 6 months after being on prednisone but didn't suggest monitoring i have just stopped prednisone after 2 years tapering off 20mg was an endurance test now my blood pressure is between 144 and 150 over 90 to 100 and I have been told I have to monitor it I suspect it is the cause of the headaches. I wasn't given any information about the side effects of prednisone other than you will gain weiught and it will affect your sleep, it did so much more than that and While I appreciate it is a life saving drug it has done me more harm than good. I am hoping that as my body adjusts to not having it my blood presure will return to normal.

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my BP was identical to your before and after. I have trouble with most medications so I was reluctant to go on a BP pill. Taking 10mg lisinopril. Its taken 2 yrs but I am finally back to normal. Check your cholesterol. Mine was always a little high(250) but went up over 300 on prednisone. I also gained 10 pounds. I now take cholesterol medication as well. Also check your A1C. Mine was always around 5.6. My highest reading on prednisone was 6.1. Even after 2 years it has only dropped to 5.9-6.0. Not taking anything for that. But I have to watch it.

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@tadatada1

I have finally reached zero prednisone starting today ( 20 weeks starting at 10 mg ) As I tapered off this time I started kevzara The pain I have now is different. My medial knees my butt cheeks and neck but not scapular. I cannot get up from the floor and climbing steps is difficult due to week legs My blood test this week dropped to 2.8 from 3.4 two weeks ago 4 weeks ago 2.4 and 6 weeks ago 3.8 for WBC In the past when I tapered off prednisone and my PMR returned my sed rate increased. Right now my pain is different and my sed rate is < 1 I have gained weight. I am afraid dr will tell me to stop kevzara due to low WBC I really was hoping my weight and most pain will decrease when adrenals start working and produce cortisol
Hope the call from dr will not stop Kevzara

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yes . some data says it can take 6 months for your cortisol to kick in. But I think most of us feel those pains. The medically accepted term is adrenal insufficiency but it leaves all of us with some adrenal fatigue. The months on steroids has greatly slowed your bodies cortisol response. My aches and pains are less now after 2 years but I still feel some adrenal fatigue. I wonder that will ever go away.
https://www.mayoclinic.org/diseases-conditions/addisons-disease/expert-answers/adrenal-fatigue/faq-20057906?fbclid=IwZXh0bgNhZW0CMTAAAR1pKJfgPIxS0nQhbndKGMcfjns72kJFiUWFqD3409SdcH9qPtMX86mJXYE_aem_ayl70UvzfP5plcUb2jrCJw

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@tadatada1

I have finally reached zero prednisone starting today ( 20 weeks starting at 10 mg ) As I tapered off this time I started kevzara The pain I have now is different. My medial knees my butt cheeks and neck but not scapular. I cannot get up from the floor and climbing steps is difficult due to week legs My blood test this week dropped to 2.8 from 3.4 two weeks ago 4 weeks ago 2.4 and 6 weeks ago 3.8 for WBC In the past when I tapered off prednisone and my PMR returned my sed rate increased. Right now my pain is different and my sed rate is < 1 I have gained weight. I am afraid dr will tell me to stop kevzara due to low WBC I really was hoping my weight and most pain will decrease when adrenals start working and produce cortisol
Hope the call from dr will not stop Kevzara

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I might add. I sent you a link about adrenal fatigue. As it points out in that Mayo link, PMR may have also been hiding symptoms of other conditions. I think many have found other things pop up. Its important to follow through with your Dr. to rule out other conditions. Hope you feel better. It does get better...

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Can you explain as in your note how I find the link you wrote you sent me about adrenal fatigue

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@tuckerp

my BP was identical to your before and after. I have trouble with most medications so I was reluctant to go on a BP pill. Taking 10mg lisinopril. Its taken 2 yrs but I am finally back to normal. Check your cholesterol. Mine was always a little high(250) but went up over 300 on prednisone. I also gained 10 pounds. I now take cholesterol medication as well. Also check your A1C. Mine was always around 5.6. My highest reading on prednisone was 6.1. Even after 2 years it has only dropped to 5.9-6.0. Not taking anything for that. But I have to watch it.

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Thank you so much for your reply I appreciate your comments and will have my doctor check cholesterol I really don’t want to take another medication but will wait and see

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