Has anyone else had pain return after reducing pred by only 2.5 mg?
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?
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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.
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.
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.
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.
Please tell re the naturopathics. What are you taking and is it over the counter or from a naturopath?
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.
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.
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.
Thank you. Much appreciated.
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.