How did you cope with the side effects tapering off prednisone?

Posted by abbeyc @abbeyc, Mar 19, 2022

Has anyone experienced issues when they first started to taper? this is day 2 for me (went from 16 mg to 14 mg) and I am experiencing headaches. Wondering if this is normal and if it will improve.

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@milld835

My tapering isn't going well. Went from 20 mg down to 15 (1 pill). Decided to increase by a 1/4 of a pill which is 1.25 mg. 15 mg to 16.25. So far not kicking in. The fatigue is getting to me. The pain is up between my shoulder blades and into the back of my neck. Legs are so tired. I seem to be very shaky (almost weak). Also, I seem to have more than normal saliva (weird or what). Hanging in there though. Not hearing back for the neurologist at all. Not able to get into the Rheumatology clinic until June or July (and that's on an urgent basis). I'm okay, just frustrated. If I didn't have this group, I would know nothing. Thank you all.

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See if you can get an RX for the 1 mg and 2.5 mg prednisone tablets. It's much easier to taper gradually with the smaller dosage pills.

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@johnbishop

See if you can get an RX for the 1 mg and 2.5 mg prednisone tablets. It's much easier to taper gradually with the smaller dosage pills.

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Thanks John. Yes I will if the Neurologist who prescribes them will ever get back to me. I just had the 5 mg pills refilled but that's the last one. Hopefully the next one will be 1 mg or at the very least 2.5. Have you experienced or heard of anyone who's body is creating more saliva, either because of the PMR or Prednisone? Such weird things go on.

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@milld835

Thanks John. Yes I will if the Neurologist who prescribes them will ever get back to me. I just had the 5 mg pills refilled but that's the last one. Hopefully the next one will be 1 mg or at the very least 2.5. Have you experienced or heard of anyone who's body is creating more saliva, either because of the PMR or Prednisone? Such weird things go on.

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I haven't experienced creating more saliva while my PMR was active but others may have and hopefully can share more.

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@johnbishop

I haven't experienced creating more saliva while my PMR was active but others may have and hopefully can share more.

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I did not have that symptom during PMR flare either.

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@abbeyc

Yes, thank you all. The headaches did stop. But the tiredness is beyond anything I've every experienced. Difficult to function (think, do my job, even exercise). Also, I went from a 0 pain level before tapering to now maybe a 8-9 pain level. I went down 2 mg Methyprednisolone (from 16 mg to 14 mg). So I am discouraged. Or is this normal ? Do others feel some pain come back a little when they taper?

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Hello Abbeyc,
I started on 20 mg of Prednisone 4/21 (16mnths) down to 6mg now. Tapering started at 2.5mg every 1 to 2 mnths. until I hit 7. 5mg. Pain, stiffness & elevated CRP levels caused my Dr. to increase to 10mg again. This was last January 2022 so tapering under 10mg has been really difficult & slow. Dr. & I go on my symptoms & CPR levels. I do feel fatigue & increase in PMR symptoms with each decrease esp under the 10mg. PMR is suppose to go into remission. Best of luck to you.

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@milld835

Yes, I'm a little disappointed as well, but back up to 15 mg. Will try again in a few weeks, but with 1 mg. only. I lived with it from Aug. 2021 (unknowingly) until Jan. 2022 and probably began in May 2021 with my first COVID-19 vax. That's when the neck pain reared it's ugly head, but I knew not of PMR at that time. Definitely a learning experience. Ugh. Went for a true walkabout today (not in a store) and it felt good to just do it. I was unable to walk much from end of Feb. to last week of March. My foot slipped off of a chair (being stupid trying to fix my shower curtain) and I scraped the skin on my left shin back about 3 inches almost to the bone. Developed cellulitis in it. Prescribed anti-biotics which worked. Had to knock off of them a day early because of the diarrhea. Had to keep it elevated. Took a long time to heal and the skin is still tender. There's not much skin there to start with. LOL. Thanks for following my story. We all have one, but it's an individual journey. Cheers ~ Deb

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Hi Deb,
My PMR started 1/24/21 36 hrs after my 2nd COVID Pfizer Vaccine. VAERS report was filled out. There is an apparent compensation for vaccine injury’s up to 2 yrs but I just found out 1 yr with the COVID Vaccine. I attempted to navigate the CICP which is the Countermeasures Injury Compensation Group for COVID vaccine injuries. It was too complicated & they recommend a lawyer. I called a local Lawyer from the CICP site. This gentleman told me the reward is so insignificant that we would pay the lawyer more than we would receive. With the other vaccine compensation program VICP the lawyers are paid by the courts if you win but not with CICP. I hope this saves any of you, with a confirmed COVID Vaccine cause, some time.
Best,
Mary

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@marymv

Hi Deb,
My PMR started 1/24/21 36 hrs after my 2nd COVID Pfizer Vaccine. VAERS report was filled out. There is an apparent compensation for vaccine injury’s up to 2 yrs but I just found out 1 yr with the COVID Vaccine. I attempted to navigate the CICP which is the Countermeasures Injury Compensation Group for COVID vaccine injuries. It was too complicated & they recommend a lawyer. I called a local Lawyer from the CICP site. This gentleman told me the reward is so insignificant that we would pay the lawyer more than we would receive. With the other vaccine compensation program VICP the lawyers are paid by the courts if you win but not with CICP. I hope this saves any of you, with a confirmed COVID Vaccine cause, some time.
Best,
Mary

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Thank you for your response. At least I'm not completely bonkers. Pretty sure mine started in June 2021 just a couple of weeks after the first jab and then hit the fan on August 14, 2021 just 10 days after the second jab. The Rheumie, who I've seen once, said to me, "did you ever think that maybe you were just meant to get PMR". That shocked me. I'm like was this my divine fate. None of this runs in my genetics. No autoimmune, no arthritis, nothing. I'm supposed to go back to her end of September. Don't think I will. I now have a new GP, who is pretty good, so unless next week's BDX shows anything nasty, I will stick with him.

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@marymv

Hi Deb,
My PMR started 1/24/21 36 hrs after my 2nd COVID Pfizer Vaccine. VAERS report was filled out. There is an apparent compensation for vaccine injury’s up to 2 yrs but I just found out 1 yr with the COVID Vaccine. I attempted to navigate the CICP which is the Countermeasures Injury Compensation Group for COVID vaccine injuries. It was too complicated & they recommend a lawyer. I called a local Lawyer from the CICP site. This gentleman told me the reward is so insignificant that we would pay the lawyer more than we would receive. With the other vaccine compensation program VICP the lawyers are paid by the courts if you win but not with CICP. I hope this saves any of you, with a confirmed COVID Vaccine cause, some time.
Best,
Mary

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I reported my PMR starting after 1st covid booster to VAERS. I read thru all the pages on compensation, but since I have good insurance I would probably not qualify.

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@juneh

So true! I’m alternating by 1mg every other day for 1-2 weeks on my ramp down. Seems to be working. Fingers crossed that it continues to work.

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Good idea to go every other day. Hope I can remember that. I had to do that with prednisone eye drops and other meds for an inflammatory eye disease called episcleritis.

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At the risk of everyone thinking I'm a nutter, I have to share this with you all. I was diagnosed in November 21 and am now tapering down to 3 mg of prednisone. Apart from losing hair and general fatigue, the pain and morning stiffness have become more tolerable with each decrease of prednisone. Two months ago, my friend and I saw the ads for Keto gummies that have been promoted for weight loss. We said, "Okay, we're suckers, let's give it a go." We ordered them from Amazon, and they are "Simpli ACV+KETO Gummies", and cost around $24 for a month's supply to be taken twice a day. I looked at the ingredients which are primarily Apple Cider Vinegar and Beet Root Juice, B6 and B12, so with lots of skepticism I started them. I began to lose weight, but the real plus is, I felt so much better with more energy and less stiffness. I took them to my rheumatologist to check them out, and although he noted that they do contain glucose, he said there was nothing in them that could be harmful. He said that the medical profession has no idea why some things work for some patients but not others, especially when it came to homeopathic remedies. So, with his approval, I have ordered more, and honestly do feel better. I read no claims that these gummies would help PMR, so it wasn't as if I was expecting it. I just thought it would be nice to lose some weight. I make no claims, but for the cost of a vitamin and no harmful ingredients, why not? No, I haven't been paid for this endorsement, but having experienced the pain of PMR, I'm happy to pass this on!

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