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Polymyalgia Rheumatica (PMR) | Last Active: 5 days ago | Replies (37)
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Replies to "I will definitely insist on an explanation next visit because ACTEMRA hasn’t worked. I am back..."
Good for you! I’m sorry the ACTEMRA failed you. But don’t lose heart. What works for one person does not for another. It is your doctors responsibility and duty to investigate other treatments. Indeed, going back on prednisone (as I did) after coming off of it from a year of treatment was disappointing. However, I am on Hydroxychloroquine but not quite through the 3 month period where it should start to kick in. I am also trialing LDN (low dose Naltrexone) and am very optimistic about this. And yes, I can take all three with the idea of dropping the prednisone, Hydroxychloroquine and stay on the LDN for a while.
I have an excellent Rheumy and my GP pretty much lets me run my own show here. I’m a huge patient advocate being in the medical profession myself. People with maladies of sorts should be as informed about their condition as the doctors they see. This is easier done today with the advent of the internet an connections such as the Mayo Clinic.
Best to you.