Is This a Safe Taper as Prescribed by my doctor?
I’ve been on prednisone for about 18 months trying to taper. I was down to 7.5 mg daily in December but totally debilitated with PMR pain. I couldn’t walk at all, couldn’t get my socks or shoes on, could barely get in or out of bed, was totally housebound etc. in excruciating pain. All around the hip girdle. Ultrasound showed tendinitis, bursitis, endesopathy all in joints and muscles.
The only advice my doctor ever gave me was to get off prednisone as fast as possible.
I told him I can’t live like this and must go up to a higher dosage.
He’s prescribed the pills now by telling me to go to 40 mg for 4 days, then 30 mg for 4 days, then 20 mg for 4 days, 10 mg for 4 days, then 1 mg for 5 days and I’m done!
Would I not be in adrenal crisis if I did this after being on prednisone for so long?
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My Dr said the same thing and it’s infuriating. They always talk about the bad side effects of Prednisone but forget that this medication allows us to live reasonably good lives. One has to watch the side effects and follow a good diet? Extra vitamins B12, etc..exercising etc…but for heavens sake don’t demonize this miracle medicine.
While I agree with getting off Prednisone as fast as possible --- it doesn't seem like a taper like that will be possible. Do you really need 40 mg currently? Maybe you could suggest that you only need 10 mg to your doctor and see how it goes. That way your doctor might understand that you don't want to take more than necessary. Then there are medical recommendations for the treatment of PMR to taper by 1 mg per month thereafter. The following recommendations are suggested according to EULAR/ACR guidelines.
"The following principles of GC dose tapering are suggested:
A. Initial tapering: Taper dose to an oral dose of 10 mg/day prednisone equivalent within 4–8 weeks.
B. Relapse therapy: Increase oral prednisone to the pre-relapse dose and decrease it gradually (within 4–8 weeks) to the dose at which the relapse occurred.
C. Tapering once remission is achieved (following initial and relapse therapies): Taper daily oral prednisone by 1 mg every 4 weeks (or by 1.25 mg decrements using schedules such as 10/7.5 mg alternate days, etc) until discontinuation given that remission is maintained."
https://ard.eular.org/article/S0003-4967(24)02544-5/fulltext
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Keep in mind these are doctor to doctor guidelines and not patient directed guidelines. However, my doctors always wanted me to communicate to them what my symptoms were and what worked and didn't work. It took me more than 12 years to get off Prednisone but that wasn't an ideal time frame.
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Maybe you can download the complete text and provide it to your doctor so both you an your doctor are on the same page. I wouldn't mention the risk of an adrenal crisis. Just say that you wish to have your pain under control so you can still function.
5 years with pmr. Now on dexamethasone.75. Still trying to get of.
I agree. Demonizing prednisone is not helpful. Some of us have tried every option to get off and have not been successful so far. What amazes me about prednisone is that it continues to work over time. Methotrexate and Kevzara were helpful initially, then provided very little benefit. And their side effects were much worse than prednisone at a lower dose, which for me has no discernable side effects or lab abnormalities. Trying to tough out the pain on a very slow taper has not worked for me. Pain just ramps up and eventually my ESR goes up. I am in my 4th year of PMR, at 5.5 mg prednisone. I still plan to taper off eventually when pain allows. I keep at a normal weight, eat a healthy diet and exercise as tolerated.
I took dexamethasone. I thought it worked well. It is a much more powerful version of steroids. I was able to just stop at .75. I went through a month or so of withdrawal type feelings But I stuck with it. The difference is I was only on it for 5 months at 2mg then tapered over the last month. I guess keep inching down. good luck
As I mentioned. I have been on it for 10 years and credit it for giving me a good life and not getting blind because of the GCA.
Do I wish I were off it. Of course but meanwhile I will manage it and be very grateful to have access to it.
I was allergic to ACTEMRA and not interested in trying anything else since I know enough about prednisone to understand and trust it,
That's 3 week reduction from 40mg to 0mg of prednisone, after 18mths of prednisone use - that's unheard of. Fast reductions to zero are only done with short term prednisone use (2 -3wks), though pulse increases and a return to what you were currently taking or somewhere near it are sometimes done. What does he propose happens after that? If you've understood his instructions correctly, I'd be finding a new doctor.
Who is demonizing prednisone? Certainly not me.
I absolutely agree. This doctor has no knowledge of PMR or prednisone.
After waiting a full year to get to a rheumatologist I finally have an appointment in April and hope she can help me.
The same GP who gave me this insane taper schedule told me my low red blood cell count (anemia) was caused by a change in the weather.😳
I was mainly referring to doctors who push tapers that are too aggressive.