1. < Polymyalgia Rheumatica (PMR)

New Diagnosis of Polymyalgia Rheumatica (Husband)

Posted by Dee @danielad, Aug 8, 2018

Hello Justin and all!

I am new in this group and would appreciate your advices on the subject of Polymyalgia Rheumatica (PMR). My husband, John has FINALLY been diagnosed with this disease last week. I did research every respectable website and found a number of articles and past studies as well. Now I need "human interaction"; people who may have PMR and would like to discuss their experiences. I believe that will help us a great deal!

This is John's story: He is 76 and has Peripheral Neuropathy of the extremities -- Feet, legs up to the knees, and at a lesser level, hands and forearms. The cause was first thought to be "Charcot-Marie-Tooth, type 2A" (CMT2A), an hereditary neuropathy. Now (nearly 20 yrs later), they are not too sure. He has no neuropathic pain, but a severe loss of sensory perception. In spite of that, he has learned to walk and drive by "feeling" via the muscles in the thigh and his knees.

In any event, I believe this Neuropathy is an aggravating factor because, as I mentioned, John has a loss of sensory perception and he is unable to pinpoint the issues on the parts affected by the Neuropathy. So, when PMR started to interfere with his ability to walk and drive, he says he feels "weak and unsteady". Before starting on 20mg of Prednisone, last week, there were days when he was totally unable to walk; however, he doesn't know "what" is not working -- The muscles in the lower/upper legs? Knees? Feet? It certainly isn't easy!

His Sed rate is 36 and C-reactive Protein is 55.3. If these values don't go down, the Rheumatologist said she will need to increase the Prednisone.

Speaking of Prednisone -- It was a "MIRACLE" medicine (20mg per day) at first! ALL symptoms went away within 2 hrs of taking the first dose! But on the 3rd day, the pain, weakness, and unsteadiness started to come back every now and then. We are at the 6th day since the diagnosis and since John started on Prednisone. What do you think of that?

Thank you for "reading" this long post. I promise to keep the future ones much shorter! And thank you in advance for any feedback, advice, or information you may want to send my way!

Hugs to all!

D.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

mtr2601 | @mtr2601 | Feb 29 1:39pm
In reply to @nyxygirl "@prestol Why, in 2024, would you go the route of MTX , may I ask? i..." + (show)
@nyxygirl

@prestol Why, in 2024, would you go the route of MTX , may I ask? i have been trying to keep up with literature and anti-IL-6R drugs are available as you probably know.
I needed >20mg dose to completely rid me of the morning stiffness and pain in both shoulders and hips .
there is a summary of the Great Debate of steroid vs biologicals in PMR in the thread about the Nov 2023 ACR meeting. attached here: https://connect.mayoclinic.org/comment/1012486/

quick google search found this :
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9012047/.

However, based on this sparse evidence, the current European League Against Rheumatism / American College of Rheumatology (EULAR/ACR) recommendations for the management of PMR advise an early introduction of MTX in patients with worse prognosis such as in patients prone to relapse or prolonged GC-therapy, as well as in patients where GC-related AE are more likely to occur [4, 7, 25]. In clinical practice, however, MTX is infrequently used, as reported by a national database study of Albrecht et al., who found that only 19% of patients with PMR received concomitant MTX [10]. This curbed use may reflect the uncertainty of the exact role of MTX in PMR, due to the limited and conflicting evidence. Therefore, further research regarding the use of MTX is high on the research agenda of the 2015 EULAR/ACR guideline for the management of PMR

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Methotrexate is commonly used in Australia for PMR patients who do not respond well to Prednisone or are having difficulty tapering. It is a requirement under our health care system that the cheaper DMARDS are tried for at least 6 months before an application is made for Actemra to be approved under the Pharmaceutical Benefits Scheme. If you want to bypass this frustrating process you have to pay over $4000 per month to access the medication.

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DadCue | @dadcue | Feb 29 2:49pm
In reply to @mtr2601 "Methotrexate is commonly used in Australia for PMR patients who do not respond well to Prednisone..." + (show)
@mtr2601

Methotrexate is commonly used in Australia for PMR patients who do not respond well to Prednisone or are having difficulty tapering. It is a requirement under our health care system that the cheaper DMARDS are tried for at least 6 months before an application is made for Actemra to be approved under the Pharmaceutical Benefits Scheme. If you want to bypass this frustrating process you have to pay over $4000 per month to access the medication.

Jump to this post

Methotrexate is commonly used in the USA too. Actemra isn't used so much because it hasn't been FDA approved to treat PMR. My rheumatologist requested a waiver to get Actemra for me because I was diagnosed with PMR but not GCA.

Actemra worked for me and I was able to taper off prednisone. There are no restrictions for how long I can be on Actemra. I currently do a monthly infusion. The way it is administered is left to the discretion of my doctor.

Kevzara is now FDA approved for PMR. For Kevzara, no approval is necessary. It would depend on the type of medical insurance a person has which would dictate how much of the cost is covered by their insurance.

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