Trying to determine long term prednisone versus other prescriptions

I can’t advise you but speaking solely for myself, I have no intention of giving up prednisone anytime soon. My initial dosage was 10mg daily and several months down the road it’s still 10mg. My plan is to ultimately get down to 5mg daily. But as for other medications and treatment options for PMR….I’m not aware of any that actually work or at least not as well as prednisone. Best of luck!

Perhaps you approach this nytrying to maximize as much anti- inflammatory interventions as possible and willing/able to do, thus minimizing needed prednisone dose. Focus on diet for instance as well as doing everything right during the week. If you have the financial resources and can locate providers or are able to purchase, I strongly rec utilizing both hbot and a pemf mat. I have incorporated all since dx in April and am well on my way to recovery and remission. Hopefully long term. CRP went from 32 to 10 in two months and ESR from 20 (though still normal) to six in same period. Feeling great. At 7 mg, soon to be six and optimistic but of course will see what happens. Plan on continuing all the complimentary stuff indefinitely. I am starting to forget to take the prednisone which to me is a good sign as previously, I could not wait to take it.

I can understand why an endocrinologist has a different opinion than a rheumatologist regarding 5 mg of prednisone taken orally. Many the the side effects from long term prednisone use are endocrine problems. Prednisone related weight gain, diabetes, adrenal suppression all fall into the realm of an endocrinologist. My rheumatologist was more concerned about stomach problems, infections and immune system suppression. Both my rheumatologist and endocrinologist agreed and both doctors wanted me off prednisone.

I took prednisone at doses greater than 10 mg for more than 12 years. My endocrinologist wasn't very optimistic that I would ever be able to taper off prednisone. I was referred to an endocrinologist by my rheumatologist. As long as still needed prednisone for PMR, there wasn't anything the endocrinologist could do. The endocrinologist referred me back to my rheumatologist.

It wasn't like I had a choice about taking prednisone or not. I couldn't stand the pain whenever my dose got lower much lower than 10 mg. At one stage I told my rheumatologist it was impossible for me to taper off prednisone. My adrenal function was poor so I was dependent on prednisone for that reason. Extreme fatigue, aches, dizziness, etc. are some of the symptoms of adrenal insufficiency.

I have severe spinal stenosis and a lumbar fusion will likely be needed in the future. The spinal stenosis wasn't caused by PMR. It was more likely caused by inflammatory arthritis which was another autoimmune disorder in addition to PMR.

Are you sure the main reason you need prednisone is because of PMR? Neck fusions and regular steroid injections sounds like you might have more than PMR going on.

I got off prednisone with a biologic called Actemra (tocilizumab) but it isn't FDA approved for PMR. Actemra might be something to consider. There is a medication that works the same way called Kevzara (sarilumab) that is FDA approved for PMR. Unfortunately, a history of diverticulitis might be a contraindication for both these medications.

Your situation sounds complicated.

@mikeshell, Lifestyle changes were the main reason my second time around with PMR went so much better than the first time - 3 and half years to get off of prednisone vs. 1 and half years the second time six years after it went into remission after my first round with PMR. If you haven't already looked into making any changes, here is some information that might be helpful unless you are already doing them.

--- Polymyalgia Rheumatica Diet: Do's and Don'ts: https://www.healthline.com/health/polymyalgia-rheumatica-diet

Wishing you well on your PMR journey and hoping it will go into remission sooner than later.

I take Tramadol for Fibromyalgia pain, it is the weakest opiate type prescription as it is a formulary and not an actual opiate. Perhaps your doctor will be willing to let you try it.
The other thing as far as Prednisone, I've read many stories of those who were not able to come off of it completely but were able to get down to between 1 and 2mg daily.
Best of luck to you.

It’s tough sometimes standing in between different specialists with different perspectives, plus taking into account your values and quality of life.

Like the others have said, we can’t exactly tell you what to do…and in theory your physicians would know hear your circumstances (but even I know that’s not always true…my rheumatologist and care team typically says I know my body best).

Anyway, I’d personally be more inclined to put more weight on my rheumatologist’s opinion because they’re very accustomed to managing long-term prednisone use and should be the expert in the ideal scenario of managing PMR. And many people with rheumatological conditions also have co-occurring conditions, so considering multiple conditions shouldn’t be a foreign concept (again, ideally). It’s understandable your endocrinologist has concerns. Still, I take Humira for my inflammatory arthritis and if for example my neurologist or other specialist suggested I switch to a different medication without consulting my rheumatologist about their concerns, that would stick out as odd to me. Maybe it’s just me but I kinda feel like they need to either stay in their lane or share the lane lol.

But the thing that also strikes me as odd is that Celebrex isn’t exactly a benign medication either? Long term NSAID use also has risks. I believe it has its own black box warning. I tried Celebrex many moons ago for my inflammatory arthritis and it didn’t make a dent in my pain; it wasn’t strong enough to counter the inflammation and I couldn’t take it in higher doses because I only have one kidney (long term NSAID use is discouraged with one kidney). There is probably a reason it’s not indicated for long term management of PMR, not to say that it wouldn’t help. But it seems odd to me when there’s general agreement about medical management of PMR to turn to something outside of those recommendations if the first line treatments haven’t been exhausted yet.

My dad’s care team said that long term use of prednisone for quality of life, as long as the rest of his risk factors are monitored is not so high risk. There’s so much caution/fear around prednisone (rightfully so) that I think other patients/providers aren’t as accustomed to the idea that there are conditions and situations where long-term use of prednisone is indicated.

That said, if it is important to you to get off the prednisone for personal or for health reasons, do you think you could talk to your rheumatologist about the other biologic medications that have recently been approved for PMR? Is it possible those could work for you?

I think in the end, it depends on what’s more important to you, which path you feel most comfortable with considering the side effects and short and long-term risks, and maximizes your quality of life. Hopefully your providers will support your decision and can help you understand all the options. I know that’s easier said than done. But it’s great your being so intentional about how to move forward.

Though not directed to me, thank you for your thoughtful and informative post. I always enjoy reading what you put forth.

Hi @ vellen….I just noticed that you have fibromyalgia as well as PMR. I’m thinking I may have both as well. Initially, my Rhuemy thought it was fibro since I had no elevated CRP or Sed Rate, but she gave me the one week prednisone script which tapers naturally by the end of the week and all my symptoms were gone, so she prescribed 6 mg. Methylprednisolone which does not seem to be working - maybe because it’s not a high enough dosage? I have no morning stiffness or pain. I do not have any symptoms until mid afternoon when the pain and stiffness, mostly in my legs, begins and lasts for several hours - sometimes longer. My GP changed my dosage to 8 mg regular prednisone which I’ve started to take in the afternoon since I don’t have morning symptoms. After reading your post about tramadol, I’m sort of thinking that may work for me. What type of fibro pain do you have? Is it an all day pain? Isolated to only one part of your body? Do you have elevated inflammation markers? How did your dr know you had both fibro and pmr?

Having multiple conditions isn't ideal under any circumstance. When Actemra worked so well for PMR, I was able to taper to zero prednisone for the first time in 12 years.

Within a couple of weeks, of being off prednisone, I had a massive flare of uveitis. My long time ophthalmologist of 30 years didn't have the heart to start prednisone again. He just sat there without saying anything. I suggested 60 mg of prednisone and my ophthalmologist said it sounded about right but I needed to see a uveitis specialist.

The uveitis specialist wanted me on Humira and said that Actemra wasn't optimal treatment for uveitis. The uveitis specialist consulted my rheumatologist who agreed that the eye inflammation needed to be controlled. My rheumatologist conceded that Actemra wasn't likely to add anything to 60 mg of prednisone so he stopped Actemra. The uveitis specialist started me on Humira.

Humira might have worked for uveitis but my uveitis has always been "prednisone responsive" so I'm not sure that Humira helped that much. The uveitis specialist insisted I stay on Humira to prevent uveitis from happening again.

As I tapered my prednisone dose back to 15 mg, I started feeling pain again. I informed my rheumatologist about the pain. My rheumatologist said that I needed to give Humira a chance to work. He said it would take at least 3 months to know if Humira was going to work from a rheumatology perspective. I stayed on Humira for 4 months and the pain only got worse. I couldn't go any lower than 15 mg of prednisone.

I went back to my rheumatologist and we had a heart to heart talk about multiple autoimmune conditions. My rheumatologist said it would be impossible to adequately treat everything that was going on. He asked me which biologic I wanted because I couldn't take both of them. I chose Actemra.

The uveitis specialist wasn't pleased and said it was only a matter of time before I had another flare of uveitis if I didn't take Humira.. I said if uveitis happened again then I would take 60 mg of prednisone again if that was needed.

When Actemra was restarted for the second time, I was able to taper off prednisone again. From 15 mg to zero in 2 months after restarting Actemra.

The first time I was on Actemra, It took me about 9 months to taper off prednisone. An endocrinologist told me when it might be safe to discontinue prednisone the first time because of adrenal insufficiency.

My rheumatologis said I should follow the endocrinologist's instructions the second time too. The endocrinoligist offered her advise. She said miraculously, my cortisol level was still "adequate" so I could go ahead and stop prednisone the second time. I went from 60 mg of prednisone to zero in 6 months the second time. My endocrinologist never wants me to take prednisone again and says prednisone causes too many endocrine problems.

I understand what it's like to try to make these decisions. After 18 months on prednisone I was down to 8 mg with good symptom control and no serious side effects. My rheumatologist said that I could not stay on a dose that high and he recommended adding methotrexate which I finally agreed to do. I had read about all the possible side effects plus no alcohol. I told him I had one beer a day and he said I could continue that but I cut back to 3 a week. At first it was brutal. I had every possible side effect but it mellowed out some and my labs are looking good: no liver issues with the methotrexate. I'm about to drop to 5 mg prednisone. So far pain is under control and fatigue is the main issue. I see the doctor soon and I see more decisions in my future. If I can't go to zero on the prednisone am I willing to put up with a 2 drug regime indefinitely? Am I willing to get off the prednisone, which is so effective at controlling sx's, and put up with just methotrexate for 2 years, which is what the doctor wants me to do? If I'm on methotrexate that long I would give up alcohol, which I don't really want to do. Or do I talk him into letting me try just a low dose of prednisone indefinitely? I'm now at 2 years on the prednisone. There isn't much to improve about my diet and exercise habits and I don't have other health issues. Tough things to figure out.