2 year struggle to get off prednisone still hard to get from 3 to 2mg

SORRY MEANT 2 YEAR STRUGGLE !!

Welcome @victoriab, PMR can definitely cause havoc with symptoms and flares when you are tapering off of prednisone. You will notice that we fixed the title for you to reflect your 2 year struggle to get off of prednisone. You might want to scan through some of the related discussions on managing PMR symptoms and tapering. Here's a search results link to get you started - https://connect.mayoclinic.org/search/discussions/?search=pmr%20managing%20symptoms.

It took me 3 and half years to get off of prednisone the first time my PMR was active. The second time I made some changes in my eating habits and exercise which helped me get off of prednisone a lot quicker the second time around. Have you looked into any lifestyle changes to help manage the PMR symptoms and tapering?

I don’t know that I have much to add, but wanted to say you’re not alone. I am a caregiver for my father who was also diagnosed with PMR in May 2022. It’s nearly two years later and he is stuck at 6 mg prednisone, so you’ve made it farther than he has.

Since January, he started having much more trouble with tapering, having low grade fevers and extreme fatigue. Finally, I expressed concern to his rheumatologist and she ordered a cortisol test to try to see if he may be having adrenal insufficiency from being on the prednisone so long. His cortisol is “a little low,” but it was low enough for her to recommend he do a consultation with an endocrinologist to be assessed for adrenal insufficiency. That could be something to look into?

The appointment is in June, so he’s holding steady at 6 mg for now because on that dose, he’s functioning better.

It is so hard. I hope you’re hanging in there.

Welcome Victoria B. I take some comfort in knowing the struggle tapering at low doses is real. Thanks for sharing. I'm trying again to stay at 2mg but it isn't easy.

Hi @victoriab.
I'm right behind you at 15 months. Was down to 5mg last September when I had a terrible flare up. I'm down to 6mg now for the last 30 days. It's been a bigger challenge for me to adjust to the 6mg. The occasional nausea and more prevalent fatigue is a major interference. For whatever reason, it seems worse now than last year. I really have to pace my physical activity or I pay for it with extra pain. What seems to help overall is getting the best sleep/rest that I can. Had to decrease my caffeine intake. Not sure I'll be transitioning to 5mg right away. I can relate to your frustration. 6mg might be the lowest effective dose that can be achieved for me. For a while anyway. My doctor said he wanted me to stay at 5mg for a while when I get there again. I'll find out in a few days what he means by "a while." Hope that things get better for you soon. Ernie

Would you please share what changes you made to diet and exercise that worked. The information on this is a bit all over the place. I know everyone is different, but it would be nice to hear what was effective. Thanks! Diane E

@dengland, What helped me the most was eliminating processed and fast foods from my daily diet and staying away from sugar or at least being more conscious about the amount I was eating in different foods/fruits. Also eliminating a lot of inflammatory foods, basically just eating healthier. For the exercise, which I still am doing, I ride a recumbent exercise bike that uses both arms and legs at least 30 to 60 minutes a day along with a few stretching type exercise. Here's some information that may be helpful on the topic.

--- Home Remedies: How a healthy diet can help manage pain: https://newsnetwork.mayoclinic.org/discussion/home-remedies-how-a-healthy-diet-can-help-manage-pain/
--- Polymyalgia Rheumatica Diet: Do's and Don'ts - Healthline: https://www.healthline.com/health/polymyalgia-rheumatica-diet

My PMR battle lasted 12 years until I was switched from Prednisone to a biologic medication to treat PMR. At least part of my inability to taper off Prednisone was due to adrenal suppression caused by long term Prednisone use. The biologic didn't suppress my adrenal function like Prednisone did.

I was referred to an endocrinologist when I was able to get to 3 mg of Prednisone. The endocrinologist said I shouldn't taper any lower because of a low cortisol level. I had to stay on 3 mg for 6 months before my cortisol level improved. After my cortisol level was deemed to be "adequate," my endocrinologist said I could discontinue Prednisone. I tapered from 3 mg of prednisone to zero in a few days after my cortisol level improved. Additionally, my endocrinologist said I shouldn't hesitate to restart Prednisone for any reason if I felt the need.

There was a need to restart Prednisone but not for PMR symptoms or steroid withdrawal symptoms. I was taking a biologic that controlled my PMR symptoms well. I didn't have to take prednisone for very long after my first attempt to discontinue Prednisone. After a few more months, I was off Prednisone again.

Do you know what triggered the PM, in the first place? In my case, I had lots of pain all over, and in hot spots, but the PM began from an allergy to cold, and it was all over. I know they tell us that Prednisone is the only real treatment for PM, but in my case I couldn't get down much below 20 mg and put on 90 lbs. among other ugly side effects. I didn't even mind the moon face. It was a new PCP then who sat me down and told me she thought I'd need to just plain move out of Alaska. That was rough. Even rougher was moving out of AK. But the PM did go into remission. I arrived in the Lower 48 with 6 broken ribs and both feet broken. That's what high doses of Prednisone will do for you. Then, doctors wrote on my med records that I had abused steroids. No. It was me who stopped it all. Honestly, 3 mg seems so small to me. But then, I"m not the one living with what it does to you. We are all each so unique. Still, might you look back in your memories and find an odd allergy or trigger that began it all, and try to attack it from that angle? It did work for me. If I get stuck in the cold too long, the ole PM does try to roar back, but now I know to treat it with lots of warm, warmth, and avoid the cold again. It then goes back to sleep, every time. That only works because we now know what triggered it in the first place.

"Then, doctors wrote on my med records that I had abused steroids."

That's a shame your doctor phrased it like that. My primary care doctor listed my prednisone use as a "medical problem." That was confusing because I didn't understand how the treatment for PMR could be the problem until very late in the game when I was diagnosed with secondary adrenal insufficiency. It was a low cortisol level that caused me to be unable to taper off prednisone.

I had a long list of medical problems after my rheumatologist prescribed "long term" Prednisone. At the very top of my medical problem list was "long term and current use of prednisone." Then my primary care doctor quantified long term with the word "decades." I wasn't aware that prednisone was a big problem until I was on prednisone for about 10 years. I then told my primary care doctor that it was my rheumatologist's fault for prescribing long term prednisone to me.

My ophthalmologist introduced me to prednisone originally. However, my opthalmologist only prescribed 60-100 mg and told me taper as instructed. My instructions were to taper off as soon as I could. My ophthalmologist was so pleased with my ability to taper off prednisone that he made a notation that I was "skilled with prednisone tapers." I only needed a month or two to taper off Prednisone when it was used to treat uveitis.

My rheumatologist was the one who got me hooked on long term prednisone use for PMR. I was told that I wouldn't be able to taper off quickly and I would be on Prednisone for at least a year. It ended up being 12 years before I could taper off again.