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?
Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
Allergic reactions are possible for any medication. Nobody would want you to take a medication you are allergic to. However, allergic reactions to biologics are comparable to allergic reactions to corticosteroids.
"The cumulative incidence of hypersensitivity reactions over 6 months for all biologics was low (< 1%)."
https://pmc.ncbi.nlm.nih.gov/articles/PMC5420339/
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This is comparable to hypersensitivity reactions to corticosteroids. I'm more concerned about long term exposure to corticosteroids. The adverse effects of long term use of corticosteroids are well documented. My 12 years of continuous daily use of Prednisone weren't exactly uneventful.
"Hypersensitivity reactions to corticosteroids (CS) are rare in the general population, but they are not uncommon in high-risk groups such as patients who receive repeated doses of CS."
https://pubmed.ncbi.nlm.nih.gov/23567983/
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I don't think there is enough data regarding long term use of Actemra but I haven't had any allergic reaction or serious adverse effect to it in over 5 years. People react differently to medications so what is good for one person might be bad for someone else. Fortunately. it is very easy for me to discontinue Actemra if something goes wrong. The same can't be said for when I was taking Prednisone.
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I'm actually more worried that my body will form antibodies against Actemra and make it less effective or it might stop working altogether.
https://www.verywellhealth.com/antibodies-to-biologics-4846279
Thanks so much for all your info. I really appreciate it.
Hello myrlyn3b
In answer to your question, 'is this a safe taper?', the answer is no. It might be a safe taper for your' doctor but they do not have your' pain or symptoms. Like others I would suggest a new doctor or better still a rheumatologist who knows pmr.
I can only suggest what I would do after being on steroids for 3 years and researching and learning slowly, now at 1.5mg per day. If you are on 7.5mg per day I would try going to 10 or preferably 12.5 per day for two weeks. If you feel much better then, you can go back down to 8 or 9 for a couple of weeks. Then if still ok I would reduce by half an mg each time instead of 1mg. Slow tapers have less chance of flares. I would also like to recommend far infrared (fir) clothing to sleep in. I find that when I sleep in this clothing the fir action helps to keep the circulation moving and the stiffness is much reduced. You could also try splitting your' dose to two thirds or three quarters of the dose in the morning and the other third or quarter later in the day. This should extend the length of the pain relief. I used to take mine with breakfast, then the other dose 12 hours later. I used this method until I got down to 3mg per day, then went to the full dose with breakfast. Sometimes large doses at night can affect sleep but low doses seem to be okay. Wishing you well and good luck!!
I agree. I am on dexamethasone.75
Thanks for your input. I was just trying to tough it out but the pain totally debilitated me so that certainly didn’t work.
I’ll try again once I get the rheumatologist in April hopefully with her expertise.
I'm 71, was diagnosed by my primary physician who told me he had similar cases so he recognized my symptoms. He tried the 50-40-30-20-10-5 Prednisone dosing, which worked. . . . for a week until symptoms came roaring back. Since August 2024, under the care of a rheumatologist, I've tapered 1/2 mg every 4 weeks, now down to 2 mg. I have frequent fatigue spells, some eye issues and some periodic heart palpitations but otherwise pretty good. Taper slowly seems to be the ticket for me.
That slow taper makes sense. What dosage did you start at in August, 2024?
started at 20 mg
Thanks
Thanks for your informative reply @cavalryman . I am currently on my second long term prednisone treatment, the first starting in 2014. I was then officially diagnosed with PMR, and finally got off the pills after 2 full years, which back then I felt was a very long time. Fast forward to summer of 2023, and my symptoms returned, yet my markers do not show PMR. The symptoms are the same, but thankfully not quite as severe as previous symptoms were. However, I’m now rapidly coming close to two years and am currently on 9mg/day. What’s very disappointing is that back in early December I had gotten down to 2 mg. for a week or so, while tapering down 1-2 mg/ month, and suddenly had two terrible days. I was then told by my rheumatologist to double the dose to 4 mg but with no relief. I then went back up to 10 mg until February where I’m now on 9 mg. After reading a lot of comments and posts from others with similar issues, and being fairly anxious about the tapering process , it sounds like I may be at less risk of flair ups with .5 mg reductions every two weeks? Any thoughts on this? My doctor recommended 1 mg reduction on March 1st, and continue on that schedule as long as I am relatively stable. When doing the math though, .5 mg reduction per month means another year and a half, and that’s if I make it that far without incident. Sorry for the long post, and am hoping you and perhaps some others will read my story and offer some sound advice. Thank you to all and I wish everyone the best results in your journey getting off these medications and back to a healthier life!