Has anyone else had pain return after reducing pred by only 2.5 mg?

Posted by charlotte61 @charlotte61, Oct 11, 2023

I'd been taking 15 mg of prednisone for two months after being diagnosed with PMR in early August (I am 62). I saw my doctor a couple of weeks ago, and he suggested I start trying to slowly taper off the prednisone. I started by cutting down to 12.5 mg a day (his recommendation), but within a week, my pain levels have increased again. I can't believe just 2.5 mg could make such a difference! It's not anywhere as bad as it was before diagnosis, but it's enough to be uncomfortable, and make my arms and legs stiff and sore throughout the day. The doctor did hint that the tapering might not work and that I may have to stay on 15 mg for a while longer.

My big concern is the bone thinning side effect of being on prednisone indefinitely. I already have osteoporosis. My doctor said I should be taking a biophosphate, but last time I tried taking those medications I ended up with stomach upset. So I feel like I'm screwed -- stuck between a choice of living in pain without the prednisone, or taking the prednisone for months/years and having my bones deteriorate and break down. I take calcium and vitamin D, and exercise every day, but I am not convinced that this is going to offset the effects of the prednisone. What have others done to help mitigate the bone thinning effects of long term prednisone use?

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

@maggie14

I was tapering at 1 mg. a .month and had a big flare-up that only subsided at 10 mgs. of prednisone. Now have been cutting back at 1/2 mg. a month and am back at 8 mgs. and doing ok but also injecting 25 mgs. of methotrexate weekly. Joping and praying for a remission to.get off all this poison but we have to do what works.

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Sorry to hear you had a flare-up! As well as prednisone works -- and I'm grateful for its ability to minimize the pain of PMR -- being on it long-term terrifies me, given all the other health problems that can arise from it. I'm really hoping I'll be able to start tapering down soon now that I also have some naturopathic supplements to take along with it.

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@walkamok

Like all of you, I have found that coming to grips with the taper has been a challenge. Over time I learned that, for me, over 1 mg/month is too fast, and the single dose in the morning recommended by my rheumy is not effective. I have been splitting the dose evenly AM & PM. After 11 months I am at 6 mg, 3 in the AM and 3 in the PM, and am symptom-free. So far so good (touch wood).

My thought is that dividing into two daily doses makes the taper gentler because although you are decreasing by 1 mg daily, at any given moment you are not seeing a decrease greater than 0.5 mg.

However, splitting pills is a pain. You almost always end up with two unequal "halves" and a scattering of crumbs and dust. These you sort into two "equal" doses, one of which you try to extract while leaving the other in the splitter. This is all done with large fingers, crummy vision, and rising impatience, with the toilet beckoning.

On the other hand, being alive is pretty wonderful! Gorgeous clouds yesterday evening.

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Yes, that is the problem -- splitting the pills into small enough pieces and getting the dose right. Next time I renew the prescription, I'll ask for 1 mg pills too. I take my entire dose of pred in the mornings, because if I take it later in the day it will interfere with my sleep.

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@marid57

Hi Charlotte,
Check out Reclast for your bones. It's given by infusion once a year so the gi tract is bypassed. I had several infusions some years ago for osteoporosis, then another this year because of taking prednisone for pmr. The first time I had a reclast infusion I felt a little bit off for two weeks. I was fine with subsequent infusions. Good luck to you!

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Thanks Marid57! I was offered Prolia injections, but at $500 a shot, it's not doable (I don't have any health coverage). I'll have to try the biophosphates again, and hope I don't end up with stomach upset.

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@terrym

I had my follow up with my Rheumy two days ago. She originally insisted that I only take a single dose in the morning, but was much more receptive that I am splitting my dose and tapering at a schedule that fits my body. When I mentioned that for now I was splitting a 5mg tablet in two (along the break line) and then splitting each half in two with an exacta knife to taper at 1.25, she immediately sent in a new Rx for 1.0mg tablets to taper at a 1mg rate. The tablet still has the break line, so it can be split easily into .5mg doses. I figure if I need to I can taper at the .5 anytime and especially when getting below 10mg per day to keep the taper within 10%.

Now 3 months into Prednisone. Started at 20mg and started taper 8 weeks ago and am currently down to 14. Splitting 10 morning and 4 evening. CRP was 6.0 and now < .5 (normal!) and ESR was 52 and now 14 (normal < 15!)

Cautiously optimistic and sticking listening to my body with slow and steady tapers.

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Yes, the 1 mg pills help a lot with precision (and less pill-splitting). The funny thing to me is that they all look so damned similar -- little white pills. You'd think maybe they'd add a little color to distinguish the currencies (I thought of mine as pennies, nickels and dimes). 😉 Like the computer industry -- only took 30 years or so to start color-coding the outlets so you didn't plug the mic into the headphones jack.

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@charlotte61

Sorry to hear you had a flare-up! As well as prednisone works -- and I'm grateful for its ability to minimize the pain of PMR -- being on it long-term terrifies me, given all the other health problems that can arise from it. I'm really hoping I'll be able to start tapering down soon now that I also have some naturopathic supplements to take along with it.

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Please tell re the naturopathics. What are you taking and is it over the counter or from a naturopath?

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Hi Charlotte. I had problems weaning down in my first two months. Started at 20mg. After two weeks on 20, I complained about the anxiety, insomnia, and erratic behavior the prednisone induced. Was dropped down to 15mg. My pain came raging back after a few days. Was put back on 20mg for month and a half. Then it was easier to transition to 15mg for next month, 10mg for following month then titrated down by 1mg/month. It seemed to flow reasonably well with minimal muscle pain. Last month I was down to 5mg when I experienced a flare up. Going up to 8mg didn't quite do the trick. Doc put me up to 15mg for 10 days . Now down to 10mg. Hope to stay there thru winter into spring. Cold weather snaps seem to take a bigger bite out of me. It would be nice to have some sort of device attached to my skin that would tell me that my prednisone level was low for early intervention.

I too have stomach issues. Diverticulitis I have to stay proactive with. What helps is my daily probiotic and Prilosec. As long as I buffer my meds with good fiber I stay in the safe zone. Even added a 1/2 teaspoon of Metamucil to my plant based morning smoothie which really helped my digestion. Vitamin D gives me headaches so I rely on the sun for that.

It's so interesting hearing so many diverse weaning methods. Next time I see my Doc, I'm going to ask for what my autonomy guidelines could be for weaning parameters without checking in.

Moderate exercise has been helpful for me. I started out thinking I just needed to heal and not stress my muscles. Found out I had more pain being less active (early in my learning curve).

Hoping and praying you have more successful progress with less pain.

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@lungranger77

Hi Charlotte. I had problems weaning down in my first two months. Started at 20mg. After two weeks on 20, I complained about the anxiety, insomnia, and erratic behavior the prednisone induced. Was dropped down to 15mg. My pain came raging back after a few days. Was put back on 20mg for month and a half. Then it was easier to transition to 15mg for next month, 10mg for following month then titrated down by 1mg/month. It seemed to flow reasonably well with minimal muscle pain. Last month I was down to 5mg when I experienced a flare up. Going up to 8mg didn't quite do the trick. Doc put me up to 15mg for 10 days . Now down to 10mg. Hope to stay there thru winter into spring. Cold weather snaps seem to take a bigger bite out of me. It would be nice to have some sort of device attached to my skin that would tell me that my prednisone level was low for early intervention.

I too have stomach issues. Diverticulitis I have to stay proactive with. What helps is my daily probiotic and Prilosec. As long as I buffer my meds with good fiber I stay in the safe zone. Even added a 1/2 teaspoon of Metamucil to my plant based morning smoothie which really helped my digestion. Vitamin D gives me headaches so I rely on the sun for that.

It's so interesting hearing so many diverse weaning methods. Next time I see my Doc, I'm going to ask for what my autonomy guidelines could be for weaning parameters without checking in.

Moderate exercise has been helpful for me. I started out thinking I just needed to heal and not stress my muscles. Found out I had more pain being less active (early in my learning curve).

Hoping and praying you have more successful progress with less pain.

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Thanks lungranger77! It sounds like getting off prednisone, or even tapering down the dosage, is a challenge for most people! I'm sorry to hear you've had difficulties too. I am back on 15 mg per day and will start trying to go down by 1 mg at a time over a period of months, and see how that goes. I have had to start taking a biophosphate medication to help protect my bones -- I didn't want to, because it always leaves me with mild abdominal cramps the following day, but I don't have a choice. I can't risk my bones becoming so fragile that they start breaking. A day of mild cramping once per week is, by comparison, a relatively small price to pay for trying to ensuring my bones don't fall apart with long-term prednisone use. I agree that exercise is important. I walk every day, and do two two-hour Tai chi classes per week. Anything that's weight bearing is important for bone health.

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@selfor

Please tell re the naturopathics. What are you taking and is it over the counter or from a naturopath?

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My remedies were recommended by a naturopath, although I was able to get them at health food stores, with some searching around. What you might need to take may differ from what was recommended for me, but I am taking two capsules of turmeric per day (Thorne Curcumin Phytosome), along with 30 drops of Rheuma-Pasc (a homeopathic remedy), once in the morning and once at night. I have also increased the amount of calcium I'm taking (I use Bone Basics) and may also up my Vitamin D from 2000 to 3000 IU a day. My naturopath also recommended an anti-inflammatory diet, which is going to be the hardest thing for me to implement, because so many of the foods I love best -- especially dairy -- would have to be eliminated or minimized. However, I have cut out red meat and processed foods, especially processed meats like bacon and lunch meats. I'll wait another week or so, and then start trying to wean off the prednisone 1 mg at a time.

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Thank you. Much appreciated.

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I had moved up to 15 mg a day and after a week or so, woke up one morning feeling 20 years younger and completely free of any discomfort. (I remember that morning so fondly.) So I started tapering to 12.5. It was effective, but I still woke up with a bit of discomfort. This morning I went back to 15 but just for today. Since I can't cut the pill into smaller units, I thought I would try to slip a booster in once in a while and see how that worked. My doctor told me to keep an eye on my blood pressure and it did go up on 15 mg, motivating me to keep trying to taper down.

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