Grouped Into 3 Buckets

I had a similar experience with Actemra (tocilizumab). I was skeptical that Actemra would work so I only tapered by 1 mg per month from 10 mg to 7 mg. Being a skeptic, I decided to taper faster to get the "inevitable flare" over with. I tapered by 1 mg per week from 7 mg to 3 mg. Since 7 mg was my "insurmountable barrier" I could never overcome, I was in uncharted territory on 3 mg of Prednisone.

I called my rheumatologist to get some instructions. I wasn't feeling particularly well on 3 mg of Prednisone. Some of the exercises you are currently doing may be more than your adrenals can handle. Exercise is good but it is also stressful to the body especially when you are not used to it.

What happened when I was on 3 mg might be useful to you depending on on long you have taken Prednisone. An a.m. cortisol level was checked by my primary care doctor. When my cortisol level was low, I was referred to an endocrinologist. My rheumatologist said I shouldn't taper any lower than 3 mg until I saw the endocrinologist.

I would highly recommend having a cortisol level checked at the stage you are at --- just as a precaution.

As it turned out, I was on 3 mg for about 6 months until an endocrinologist said my cortisol was adequate. The endocrinologist didn't know and would not predict what would happen if I stopped taking Prednisone. We had a long discussion and made contingency plans for when I would discontinue Prednisone. The endocrinologist said I could go back on Prednisone for any reason if "I felt the need."

Things didn't go particularly well the first time I discontinued Prednisone. I needed 60 mg again a week later! I had a flare but not a PMR flare which was a bit of a surprise to everyone involved.

I tapered off Prednisone a second time but not until a different biologic was tried. In the end, it was my choice to go back on Actemra. My Actemra injections were increased from every two weeks to every week. The second time I tapered off Prednisone was uneventful. I tapered from 15 mg to zero in 3 months. There were no surprises the second time I tapered off Prednisone.

I have been off prednisone for 3 years. Actemra was a game changer for me too. I currently do monthly infusions of Actemra.

I want to go that route. I tried twice to go from 10 to 7.5 after 2 weeks (I could deal with that, but it wasn't great), then two weeks to 5, and that's when I couldn't handle it. so I'm back to 10. My appointment is in 3 weeks, and I hope she will let me get into a slower taper-1mg at a time. Anyway, I also made a consultation appointment for a second opinion with a rheumatologist, with whom I have come into contact through my expert witness work. he handles a lot of really obscure autoimmune cases. Of course, he is in Beverly Hills, and I'm paying $500 out of pocket for him to review my records, talk to me, and let me know his opinion on diagnosis and treatment. My Rheumy here still says I may have serum negative RA but I have zero signs of it and my onset and symptoms are classic PMR. Sigh. Thanks for letting me vent a bit.

It isn't as easy as one would think to distinguish between seronegative RA and PMR. They both respond to prednisone so that isn't diagnostic.

Seronegative RA, spondyloarthritis (SpA) as well as elderly onset RA can all mimic PMR and vice versa. Patients with late-onset SpA frequently present with PMR-like features, such as pain and stiffness in the shoulders and hip girdles, unexplained constitutional symptoms, and high levels of acute phase reactants at the beginning of the disease.

Why does your rheumatologist suspect seronegative RA?

To make things more complicated, it is quite possible to have both PMR and any combination of the above disorders. The overlapping features of autoimmune disorders in general are hard to differentiate. There is no consensus on what PMR is or the various types of inflammatory arthritis. There are a variety of ways that people experience the onset of PMR so that complicates things even more.

Currently trying to wean from 5mg. (PMRx18months). I seem to have plateaued. Supposed to have already tapered to 4mg but nagging shoulder pain is telling me "not yet". It has taken longer to settle in on 5mg. Right now 5mg seems to be the lowest effective dose. Hoping to go down to 4mg when shoulder pain subsides. The pain showed up after being on 5mg for a little over two months. Will be talking to M.D. about the next step.

I agree that’s a big drop from 5 to 2.5. Doomed to cause pain if not a full flare. . In my experience under 10 mg the safer and more successful taper is by .5.
So 7, then 6.5 for two weeks, then 6 etc. working for me. But an adjustment at each drop in the dose.

I'd find a different Rheumatologist. No point in being set up to fail.

I am on 1.5mg of prednisone.. 8 years now of having tapered from 25 and a couple flares. Was between 5 and 2.5 for most of that time. I now went to a Rheumy who said PMR only lasts 1 year. no more. (so right away I didn't care so much for her.) She is suggesting Sulfamonide (think that is the name.) My question. Is 1.5mg. or 1mg of prednisone if it keeps your feeling ok so very bad? worse than these other drugs. Sulfamonide, Methotrexate, aceterma or for that matter 2500 of Tylenol every day (which I am taking because of all the aches and pains at 1.5. Thanks!

I think most “veterans” on here would agree that you do not continue prednisone simply because it makes you feel better. That would seem to be the “addiction” that my rheumy warned me about at the beginning of my (now successful) treatment for PMR after ruling out most other possible causes of my condition.
There are many conditions besides PMR that can be causing your pain, and which should probably not be treated with prednisone.
Pain is a symptom, not a disease, and all pain is not PMR pain.
From what you have related here, I would suggest that it is most important that you pursue a diagnosis, and then decide on an appropriate treatment. Your rheumy is not crazy.
Best of luck.

You can probably find a rheumatologist that would be happy to prescribe low dose Prednisone to you for the rest of your life. My rheumatologist actually said, "if I only needed 3 mg or less there wouldn't be too much concern." My rheumatologist said this prior to wanting me to try Actemra.

Since I was on Prednisone doses in excess of 10 mg daily for 12 years, my rheumatologist's comment about not being concerned wasn't pertinent to me. I had to rectify "quality of life" with my strong desire to get off Prednisone. That wasn't that difficult for me to do because Prednisone wasn't my ticket to a quality life. When I read all the obvious Prednisone side effects people have on forums like this one it makes me wonder how anyone wants to take Prednisone for more than a couple of years.

My personal belief is Prednisone is a good "short term" medication for PMR. The consistent thing I read in the medical literature is the "long term dependence" on Prednisone isn't good no matter what disorder is being treated. More and more, the medical research is saying even low dose Prednisone isn't good for the long term.

Dependence isn't an addiction when you realize the body depends on cortisol produced by the adrenals to regulate inflammation. When considering the adrenal suppression that occurs when we take Prednisone there is a choice we need to make. Either we allow our adrenals to function as they should or we continue to take Prednisone as a cortisol substitute.

The real dilemma is finding an alternative to Prednisone to treat PMR. People with PMR need to advocate for alternatives to prednisone rather than promote the "quality of life" of long term Prednisone use. Fortunately, I agreed to try Actemra. My rheumatologist and I both agree I'm "better off" being on a monthly infusion of Actemra and not taking Prednisone for the rest of my life.

When Prednisone was initiated for PMR, I was told it would be for a year or two and it ended up being 12 years. From my long term experience with prednisone, I have a difficult time telling anyone they should do the same. My quality of life didn't improve until after an alternative to Prednisone was found.

"Pain is a symptom, not a disease, and all pain is not PMR pain."

Isn't that the truth!

Pain is also a symptom of tapering off prednisone which makes it even harder to taper off prednisone.