Home Forums General Discussion Polymyalgia rheumatica treatment

This topic contains 2 replies, has 2 voices, and was last updated by  Jan Lucinda1 4 years, 8 months ago.

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  • #307570
    Jan Lucinda1
    Participant

    Does anyone know of AP treatment for PR? A friend has been treated only with prednisone with major side effects.

    #368485
    Maz
    Keymaster

    @Jan Lucinda1 wrote:

    Does anyone know of AP treatment for PR? A friend has been treated only with prednisone with major side effects.

    Yes, I have spoken with a few PMR folks in past 5 years. A dear friend of mine also just got dx’d in December, but as he runs his own biz, he needed to keep functioning and chose the conventional route. Unfortunately, he also has Type 2 diabetes, so the staple med (prednisone) hasn’t been good for him in this regard, exacerbating his diabetes, and the rheumy has put him on methotrexate to try to get him off the pred. PMR is usually self-limiting, though it is excruciating and can last for a year or so before going into remission. It usually affects more women than men, over the age of 50. It can also relapse after remission is reached.

    The two ladies I spoke with took different routes – one took the conventional pred route and her PMR resolved in 2 years, but she also relapsed within a year. The second lady I spoke with chose abx therapy (she saw a Lyme Literate MD) and she was in remission within 6 months. I haven’t heard from her again (she was hearing impaired, so I spoke to her through email rather than by phone), so am presuming she is in sustained remission, but I am unable to confirm that.

    I am unable to remember what type of abx protocol the latter lady was on through her LLMD, though I seem to recall that she was on a combination abx protocol. My suggestion would be for your friend to obtain a LLMD list through the apdoctors@roadback.org email and then to try to see one of them to get assessed for treatment. LLMDs are pretty au-fait in dealing with all kinds of chronic infections, not just Lyme, so it’s a reasonable choice to see this type of doc as monotherapy alone may or may not be adequate.

    Does that help, at all, Jan? Sorry I can’t provide much more info, but there aren’t many PMR patients who come through here, though it is a rheumatic disease. There was also another forum member here (Toml) who was dx’d with PMR, but also went to see a LLMD. You might try connecting with him via PM to see how he is doing now.

    viewtopic.php?f=1&t=5271&hilit=polymyalgia+rheumatica

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #368486
    Jan Lucinda1
    Participant

    Thanks, Maz. I will convey the message.

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