Trying to determine long term prednisone versus other prescriptions

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.

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.

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?

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?

Hi. Yes, I have both. I was diagnosed over 20 years ago with fibromyalgia while Tramadol was in the early stages of release and my doctor gave me samples. I was lucky because his mother had fibro and had found how well it worked for her pain. These days doctors aren't keen to prescribe it as it can be addictive. They have you try the SSRI and SNRIs first like Lyrica or Cymbalta. Both I hear are very good if you can tolerate them.
I have all-over pain and most if the pressure points where, when pressed feels like a bruise. I was diagnosed with PMR at the end of May this year. Unfortunately the Prednisone, though very helpful against PMR pain, doesn't touch the fibro pain.
I don't know my inflammatory markers and though I did have a labs done with PMR, I don't recall it done for the fibro.
Sorry not to be of more help but don't hesitate if you have any further questions..
I do have one for you. There is a board here regarding PMR being triggered by the Covid shots and an NIH Study that backs that up. Does your PMR align with any Covid shots?

Thank you...and yes my PMR was diagnosed after my second COVID shot. I also had a very bad reaction after my first shot. Intense pain in my muscles, cramping, the evening of the shot, chills, slight fever. My Rheumatologist suggested I do not get any more covid vaccinations.

I was diagnosed with PMR in April 2015. My symptoms started in the fall of 2014. It was awful. Fortunately, my primary care physician took me seriously when I brought it up in December 2014. I had to wait four months for my appointment with the rheumatologist (she has a great reputation). Fortunately, during the four months of waiting, the pain diminished a tiny bit every week . . . but, it was still pretty bad.

After all the tests, etc., she confirmed PMR and said there wasn't much to treat it except prednisone. This rheumatologist was very honest with me and said there is little known or understood about PMR. I've known too many people that struggled to get off of prednisone and I wanted to avoid it if possible. My primary care physician suggested two Aleve twice a day. That did help, but I was concerned about the long-term consequences. I received no pain reduction with cannabis and CBD products.

I then was chatting with an acquaintance. She has rheumatic arthritis. I had heard RA shared some similarities with PMR. She managed her RA with an herbal supplement, Zyflamend. It's turmeric-based and also contains rosemary and ginger. I purchased some via Amazon and it works well about 90% of the time and I don't worry too much about long-term consequences. If I have a flare-up, I will take two Aleve. I also find movement, moist heat, and massage (with cupping) help too.

I have to be careful with vaccines and limit myself to one at a time with several weeks in between. The most important thing for me was getting a diagnosis beyond someone telling me "You're getting old and creaky."

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.