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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Sep 10 12:05pm | Replies (1906)Comment receiving replies
Hi,
Just visiting as a new person to the support group. I was diagnosed with PMR 12 years ago so I'm not a stranger to PMR. I'm currently doing well although the road to where I'm currently at was quite bumpy. I'm not a stranger to prednisone as I was taking prednisone bursts for other autoimmune problems for 20 years prior to the diagnosis of PMR. I was diagnosed at age 54, retired at age 62 and I'm currently 66 years old. My rheumatologist thought that taking prednisone for 12 years for PMR was too long and prescribed Actemra (tocilizumab) and it has worked well.
Replies to "Hi, Just visiting as a new person to the support group. I was diagnosed with PMR..."
Aloha
I have had PMR for six years I am 67 years old and was on prednisone for five out of six years.
I could not maintain remission for more than two months before PMR stuck it’s ugly head out again and I was nearly crippled again.!
I moved to Hawaii and found a Doctor Who recommended low-dose naltrexone
I have been on LDN now for almost one year
I think it’s something that the mayo clinic needs to look at and study.
Hello @dadcue, I would like to add my welcome to Connect along with other members here in the discussion on PMR. I've had 2 occurrences of PMR but it is currently been in remission a little over 2 years which makes me happy. I think it's really good news for others suffering from PMR to hear how Actemra (tocilizumab) has allowed you to be off of prednisone while treating PMR.
@jules11 and other members who are interested to learn more about the drug, here is some information on how it works:
February 13, 2018 - Imaging Changes Examined in Tocilizumab-Treated Polymyalgia Rheumatica:
-- https://www.rheumatologyadvisor.com/home/topics/research/imaging-changes-examined-in-tocilizumab-treated-polymyalgia-rheumatica/
Tocilizumab is effective against polymyalgia rheumatica: experience in 13 intractable cases:
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4663453/
@dadcue, did you stop taking prednisone for the PMR once you started the Actemra or were you able to taper to a lower dosage of prednisone?
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Hi dad he, can you explain a little more about tocilizumab? How has it worked for you? How long have you been on it and how has it enabled you to taper the pred? What dose of pred are you on now, and what is your taper plan? Thanks so much.