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New Diagnosis of Polymyalgia Rheumatica (Husband)
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.
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Hello, I am newly diagnosed and have had a similar experience with prednisone. I started at 15 mg and two weeks later was at 40. After each increase I would feel good for 2-3 days, then the pain would return. Finally on 40 mg my sed rate was near normal (31 down from 77), and I was pain-free for a week. My rheumatologist lowered me back down to 30, and again I am having some morning pain. Prednisone dosing is like a “dance”, forward a few steps and back a few. Good luck to your husband! He is lucky to have your support!
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2 ReactionsI was newly diagnosed in July and began prednisone at 20 mg with my symptoms gone within 2 hrs of stating prednisone. I did not start tapering until November and so far I am down to 2 mg with no problems. I see my dr next week and I’m anxious to see my inflammation rates. I feel normal at this point. I am having knee replacement in April so I hope to be completely off prednisone. My dr kept me at a taper rate of small doses slowly which I feel is very important based on all I’ve read.
Good luck
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5 ReactionsI started Prednisone a week ago 15mg my Mobil has improved a bit some days more than others but still extremely stiff in the morning and my arms is tender and sore as I am a side sleeper. The medication gives me brain fog every afternoon and have had night sweats too
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1 ReactionKate, you are lucky. Sounds like you have a great doctor. June, I am sorry you are not reacting well to prednisone. I too started at 15 (one month ago) and am now at 30. My side effects are fluid retention and insomnia. I saw my rheumatologist yesterday for the second time. She explained that you need enough prednisone to really zap the inflammation which is causing your pain, otherwise you risk a bad flare and will be starting all over again. I will manage my own tapering schedule, but she encouraged at least two weeks at each dose. I am on 30 mg and will go down by 5 mg each time. When I am below 20, I’ll start methotrexate and try to get off the prednisone. Good luck, both of you.
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1 ReactionMy doctor is extremely thorough. I am staying at this dose for three weeks then have another blood test to see if my inflammatory markers are reducing if so I will be able to titrate down but have also been for referred to a Consultant re query inflammatory bowel disease
I have had IBD (Crohn’s) for 14 years. It is challenging having more than one autoimmune disease. I am hoping to eventually find a drug or combination that can treat them both. I hope you get good info from the consultant.
I was diagnosed with reactive arthritis with recurrent uveitis at least 20 years before PMR was diagnosed. All my rheumatologist could say at the time PMR was diagnosed was that it was "unfortunate" to have more than one autoimmune disorder.
It took me 12 years to get off prednisone. I was in the 30-40 mg range for the first 5 years. I managed to stay in the 20-30 mg range during the next 5 years.
After knee replacements and a few other corrective surgeries, I managed to stay in the 10-15 mg dose range of prednisone. It wasn't until a biologic called Actemra was tried when I was able to taper off prednisone.
It took less than a year for me to taper off prednisone the first time after Actemra was tried. Unfortunately Actemra injections didn't work well for uveitis. That was when my Actemra dose was increased and ultimately changed to a monthly infusion instead of weekly injections.
Believe it or not --- Crohn's is classified in the same realm as reactive arthritis. There is a whole family of autoimmune disorders that are called spondyloarthritis. Scroll down and the following link mentions Enteropathic Arthritis (EnA) Arthritis Associated With Inflammatory Bowel Disease
https://spondylitis.org/about-spondylitis/overview-of-spondyloarthritis/?returnurl=/types-of-spondylitis
I'm not saying it is impossible to have both PMR and Crohn's because it is possible. There aren't many options besides prednisone for PMR. However, there are quite a few biologic options for Crohn's.
https://www.webmd.com/ibd-crohns-disease/crohns-disease/crohns-biologics
Please ask your rheumatologist if one of these biolgics may be appropriate for both PMR and Crohn's. Don't settle for long term prednisone for PMR and neglect the Crohn's. Prednisone may exacerbate Crohn's if it is used long term. Don't let anyone convince you long term prednisone is the best option.
Trying to remain optimistic because being both hopeful and optimistic is very important too!
Actemra (tocilizumab) blocks the IL-6 cytokine that is implicated in both PMR and Crohn's. Unfortunately, Actemra has a tendency to cause bowel perforations in people with inflammatory bowel disease.
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2023.1295230/full
@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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1 ReactionActually, I am a big fan of biologic drugs! I have been taking one (inflixamab, brand name Inflectra) for many years to manage Crohn’s disease, with total remission for past 12 years and no side effects. I have been told I cannot take an IL6 inhibitor in addition. I am quite resistant to going off the inflixamab, and will be speaking with my gastroenterologist soon about alternatives. I don’t think there is anything as effective. As for the PMR, I need an alternative to prednisone because I have osteopenia (before treatment, full-blown osteoporosis), and my rheumatologist says MTX is the best option. No decision yet, and I remain on pred 30 for at least another week before attempting to taper.
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2 ReactionsI was told the same about taking more than one biologic --- no can do!
Inflixamab, brand name Inflectra is a "biosimiliar" to Remicade---so a TNF-inhibitor. As you probably know, TNF-inhibitors haven't been shown to be efficacious for PMR/GCA.
https://pubmed.ncbi.nlm.nih.gov/17470831/
"Although too small to be definitive, the trial provides evidence that adding infliximab to prednisone for treating newly diagnosed polymyalgia rheumatica is of no benefit and may be harmful."
My ophthalmologist insisted on stopping Actemra (IL-6 inhibitor) because it wasn't an optimal treatment for uveitis. I was reluctant to stop Actemra because it worked so well for PMR. My rheumatologist said I should try Humira (TNF-inhibitor) to see if it works.
After two months I could tell Humira wasn't working well for PMR. Humira probably worked for uveitis. My rheumatologist said I needed to "give Humira a chance to see if it would work for PMR. He said I needed to be on Humira for at least 3 months to know if Humira would work or not." I gave Humira a chance to work and it still wasn't working.
I'm not advocating for any biologic. However, I think it is impossible to know what will work unless you try it to see. My rheumatologist said it would be impossible to optimally treat two different autoimmune disorders. He allowed me to pick the biologic that worked best for me.
I wish you luck with whatever is tried.