Is it PMR?

Don't feel like you are in the wrong group. If you were diagnosed with PMR and treated with long term Prednisone you have more in common with this group than not.

I have multiple autoimmune conditions including PMR. For some reason, I feel more at home with people who have PMR just because of my long term Prednisone use.

I was involved with a seronegative inflammatory arthritis group before I was diagnosed with PMR. I never felt like I belonged in that group because those folks were rarely treated with prednisone for long periods of time. They were mostly treated with TNF-inhibitors while I was on prednisone for years. I was welcomed into the inflammatory arthritis group but I had a hard time defending prednisone.

If you are currently on Prednisone ... it might not be so easy to taper off.

"Your doctor may have you use a TNF inhibitor in combination with other drugs, such as methotrexate, prednisone, hydroxychloroquine (Plaquenil), leflunomide (Arava), or sulfasalazine (Azulfidine)."
https://www.webmd.com/rheumatoid-arthritis/tnf-inhibitor-inflammation
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Other than the treatment approach to inflammatory arthritis with the use of TNF inhibitors, everything else is the same. The pain is similar no matter what autoimmune disorder people have. None of these autoimmune disorders are an exclusive group based on a diagnosis. Nothing prevents a person diagnosed with PMR from also having inflammatory arthritis.

My personal belief is there should be more emphasis on treating the chronic inflammation and less emphasis on treating a diagnosis. A diagnosis is often wrong.

Thank you for your words, I rarely feel as though I belong in groups. I appreciate you.
My Rheumy lives in Phoenix, I’m in Central Oregon. She is retired and is only here every 4 months. The other traveling doctor is here when she isn’t. He triggered my medical PTSD and I refuse to see him again as he messed with my head for weeks after my appointment with him.
The “good doc” is starting me on leflunomide and is putting me back on 5 mg prednisone. I have blood tests in seven days and every 30 days after that until she gets back. She told me the other jerk has to follow me while she’s gone, but I won’t go see him.
Meanwhile, I can’t take NSAID’s for pain, only a fever reducer - Tylenol. Nothing short of 20mg prednisone has helped the pain in the past. Maybe cortisone shots in my hands, shoulders and hips will help?
Terri

I was diagnosed with PMR in May, then my rheumatologist changed and the new one said no its not that is is a form of RA. I never heard of what she was saying, she just keeps tossing meds at me. My knee blew up, like 4 times or more the side of the other. I did have a positive ANA test like 4 years ago but not showing now. I have pain in both shoulders and between them, both hips and lower back. I am going to see a new doctor I am going to bring this up. Thank you for sharing, hope you are feeling better.

Was kevzara considered ? It treats both pmr and ra.

@ronludington thank you for the suggestion, but insurance makes me go through all less expensive drugs before they will approve the more expensive. Also, my Rheumy is only here every 3 to 4 months so it’s going to take a minute to work through.
Terri

@rocksology

I'm on a biologic called Actemra (tocilizumab) which is in the same classification as Kevzara. They both work in the same way.

If you have inflammatory arthritis alone or in addition to PMR, it should be easier to get Actemra covered and paid for with original Medicare and a supplement. Actemra can be given as a monthly IV infusion. For some reason it is easier for inflammatory arthritis patients to be approved for a biologic when administered by an IV than it is for PMR patients to be approved for Kevzara as a weekly injection.

It is true that insurance companies want you to try less expensive options first. My rheumatologist didn't exaggerate when he said all other treatment options had failed in my case.

What seemed odd to me is that some people say prednisone is "the only and the best option for PMR." It is no wonder that research into better treatment options for PMR has lagged behind other autoimmune conditions. If patients believe prednisone is the only and best option for PMR then there isn't any need to find another option.

My rheumatologist thought Prednisone for the rest of my life wasn't a good outcome. My rheumatologist stated in the authorization request that "Actemra represented the best chance for me to ever get off Prednisone." It was clear he didn't believe prednisone for the rest of my life was a good option.

Also, infusions are covered by Medicare B, so there pretty much free.
My kevzara had to be authorize as the only option left for me and my pmr.
But actemra would be the better choice for you.

@ronludington

Yes ... it is true about infusions being paid by Medicare. I get Actemra infusions at no cost to me. As a veteran, I go to a VA hospital for my infusion and it doesn't cost me anything. The VA wouldn't charge me anything even if I didn't have a Medicare supplement. I'm happy that the VA submits a claim to the insurance company that provides my supplemental insurance and gets reimbursed for part of the cost of my infusion. The VA can't submit a claim directly to Medicare because one government agency can't bill another government agency. At least that was what I was told.

@ronludington no, I have pretty serious inflammatory bowl disease and the risk of bowl perforation made it not an option. I've spoke to a few who are taking it and the flu like symptoms are miserable.

@leighton68 yikes, auto correct- bowel not bowl! Lol