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.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@macadoo

Has anyone taken Vitamin B5 or B12 to help with Adrenal fatigue while tapering Prednisone for PMR?

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Neither my father nor I (he has PMR; I have a different inflammatory arthritis) has tried this long term. His PCP prescribed B vitamins at one point for fatigue before PMR diagnosis and it had no effect.

I took electrolyte supplements (for a medical reason) that happened to have excessive amounts of B vitamins and it ended up causing neuropathy because of the extreme amount of B6. It’s a common side effect, so just something to be aware of.

One of my father’s main PMR symptoms is fatigue, which could be a symptom of adrenal fatigue but it’s hard to pick it apart, and he takes LDN (low dose naltrexone) for fatigue, as do I and it’s very effective with very few if any side effects. I’ve thought about bringing it up in this space but worried about opening up a potential can of worms since it flies very much under the radar.

It’s a micro dose of naltrexone, prescribed off label from a compounding pharmacy for various chronic pain and inflammatory conditions. At such low doses it’s being researched for and is thought to increase endorphins and modulate glial cells (which when overactive are believed to cause chronic pain).

It’s been used for fibromyalgia, chronic fatigue and central sensitivity for years and now is becoming more well-known because people are trying it (including at Mayo) for long COVID.

I don’t want to make it sound like a magic pill or anything but it has been helpful, it’s safe and has very few side effects. It just can be difficult to obtain because many physicians aren’t aware of it or aren’t comfortable with compounding pharmacies, and it requires a prescription.

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@emo

Neither my father nor I (he has PMR; I have a different inflammatory arthritis) has tried this long term. His PCP prescribed B vitamins at one point for fatigue before PMR diagnosis and it had no effect.

I took electrolyte supplements (for a medical reason) that happened to have excessive amounts of B vitamins and it ended up causing neuropathy because of the extreme amount of B6. It’s a common side effect, so just something to be aware of.

One of my father’s main PMR symptoms is fatigue, which could be a symptom of adrenal fatigue but it’s hard to pick it apart, and he takes LDN (low dose naltrexone) for fatigue, as do I and it’s very effective with very few if any side effects. I’ve thought about bringing it up in this space but worried about opening up a potential can of worms since it flies very much under the radar.

It’s a micro dose of naltrexone, prescribed off label from a compounding pharmacy for various chronic pain and inflammatory conditions. At such low doses it’s being researched for and is thought to increase endorphins and modulate glial cells (which when overactive are believed to cause chronic pain).

It’s been used for fibromyalgia, chronic fatigue and central sensitivity for years and now is becoming more well-known because people are trying it (including at Mayo) for long COVID.

I don’t want to make it sound like a magic pill or anything but it has been helpful, it’s safe and has very few side effects. It just can be difficult to obtain because many physicians aren’t aware of it or aren’t comfortable with compounding pharmacies, and it requires a prescription.

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Thank you for the info…I’ll do some research.

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@macadoo

Thank you for the info…I’ll do some research.

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You're welcome! There's a discussion on Connect you might find helpful here, and many links/resources are mentioned, dosing, etc.: https://connect.mayoclinic.org/discussion/ldn-dosing-for-fibromyalgia-and-mecfs/?pg=2

Here are two articles I found helpful while considering it:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8395119/

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@macadoo

Has anyone taken Vitamin B5 or B12 to help with Adrenal fatigue while tapering Prednisone for PMR?

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No, but just before official dx I started b12 injections as my was very low normal and it actually helped ease the arm pain quite a bit. Will be continuing them as have had low b12 on and off and a life filled with kots of stress.

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@annettetompkins

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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1st, I'm sorry you have PMR. My question is about Keto-Acv gummies. I lost a leg 3+ years ago. A lifelong athlete, being bedridden due to severe joint degeneration I've been bedridden about a year, the result of that is a 70+ lb. gain. Do they work for real weightloss? I'm also excited about them making you feel better and look forward to that also. Thanks for your answer if possible. Sara

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@emo

Neither my father nor I (he has PMR; I have a different inflammatory arthritis) has tried this long term. His PCP prescribed B vitamins at one point for fatigue before PMR diagnosis and it had no effect.

I took electrolyte supplements (for a medical reason) that happened to have excessive amounts of B vitamins and it ended up causing neuropathy because of the extreme amount of B6. It’s a common side effect, so just something to be aware of.

One of my father’s main PMR symptoms is fatigue, which could be a symptom of adrenal fatigue but it’s hard to pick it apart, and he takes LDN (low dose naltrexone) for fatigue, as do I and it’s very effective with very few if any side effects. I’ve thought about bringing it up in this space but worried about opening up a potential can of worms since it flies very much under the radar.

It’s a micro dose of naltrexone, prescribed off label from a compounding pharmacy for various chronic pain and inflammatory conditions. At such low doses it’s being researched for and is thought to increase endorphins and modulate glial cells (which when overactive are believed to cause chronic pain).

It’s been used for fibromyalgia, chronic fatigue and central sensitivity for years and now is becoming more well-known because people are trying it (including at Mayo) for long COVID.

I don’t want to make it sound like a magic pill or anything but it has been helpful, it’s safe and has very few side effects. It just can be difficult to obtain because many physicians aren’t aware of it or aren’t comfortable with compounding pharmacies, and it requires a prescription.

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I can confirm your health concerns about too much vitamin B6. I'd heard that a deficiency of B6 was not good for PMR or oxalate arthritis, so asked my doctor about taking a supplement. She wisely sent me for blood tests first and we discovered I had a dangerously high B6 level, three times the amount considered a risk for causing Peripheral Neuropathy.

Although the recommended daily dose of B6 is only 1-3mg and diet is usually sufficient for that, many supplements like multivitamins and particularly magnesium tablets can include high levels of B6. The magnesium tablets I'd been taking for years were found to have caused the overdose at 60mg of B6 per daily tablet. I've since changed magnesium brands and check everything now.

Please check any supplements or vitamins for B6 and dump them if the level is over a few milligrams of B6. More is definitely not better.

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You are tapering too fast. It is not a race. Please check out healthunlocked.com for tapering schedules.

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I started prednisone at 15mg per day, after a hiccup where my dr wanted me to go to 12.5 after 2 weeks... nope, three days later I was in pain again. I was able to get there after a couple more weeks. I had an appt on July 11 where he agreed to give me an rx for 2mg for the next taper so I could go down to 12 or maybe 11.5. I had the rx picked up yesterday and they're 5mg. *sigh. You can't get to either from 5's.
I called and the nurse tried to tell me what my schedule was and I was to be tapered to 10mg. I corrected her. Papers shuffled and "Oh". It's the weekend and nothing called in so I am staying on the 12.5 for now.
My doctor had been out for a month, his wife had a baby and another doctor covered who went through the failed taper with me.
Hopefully this wasn't too hard to follow.

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@vellen

I started prednisone at 15mg per day, after a hiccup where my dr wanted me to go to 12.5 after 2 weeks... nope, three days later I was in pain again. I was able to get there after a couple more weeks. I had an appt on July 11 where he agreed to give me an rx for 2mg for the next taper so I could go down to 12 or maybe 11.5. I had the rx picked up yesterday and they're 5mg. *sigh. You can't get to either from 5's.
I called and the nurse tried to tell me what my schedule was and I was to be tapered to 10mg. I corrected her. Papers shuffled and "Oh". It's the weekend and nothing called in so I am staying on the 12.5 for now.
My doctor had been out for a month, his wife had a baby and another doctor covered who went through the failed taper with me.
Hopefully this wasn't too hard to follow.

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Breaking those 5mg tablets is a pain for sure. When I was told to reduce from 12.5mg to 10mg in the one go, I felt it could be too much, so cut the 5mg tablet in half, then carefully in half again. Because they don't cut evenly at that size, or part of it crumbles away, I kept the two larger quarters (which I counted as 1.5mg) and discarded the two smaller quarters (counted as 1mg).

I reduced from 12.5 to 11.5mg first (2X 5mg tabs + 1X 1.5mg piece) without a problem, then reduced to 10mg straight after that. Both reductions were done without pain in 19 days, less time than the one scary reduction was due to take.

Get the pill cutter out and do it your way, the better safer way.

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@megz

Breaking those 5mg tablets is a pain for sure. When I was told to reduce from 12.5mg to 10mg in the one go, I felt it could be too much, so cut the 5mg tablet in half, then carefully in half again. Because they don't cut evenly at that size, or part of it crumbles away, I kept the two larger quarters (which I counted as 1.5mg) and discarded the two smaller quarters (counted as 1mg).

I reduced from 12.5 to 11.5mg first (2X 5mg tabs + 1X 1.5mg piece) without a problem, then reduced to 10mg straight after that. Both reductions were done without pain in 19 days, less time than the one scary reduction was due to take.

Get the pill cutter out and do it your way, the better safer way.

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You should ask your doctor for prescriptions for 2.5 mg and 1 mg prednisone tablets. They make tapering a lot easier with less pill splitting.

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