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Find a rheumatologist in Northern Colorado
Polymyalgia Rheumatica (PMR) | Last Active: 4 hours ago | Replies (16)Comment receiving replies
@pbk128 . Welcome to the wonderful world of PMR! where if the disease does not do you in, the meds just might! In all seriousness....I am not sure about the side effects of the biologics being as toxic or more than prednisone. That is probably debatable. There are some folks on this chat room that might want to chime in on that. And, , remember, these are just published side effects. Not everyone has them and they are not guaranteed to have them. For example, having heart issues, bone density issues, and diabetes certainly makes taking prednisone more risky than if you do not have these conditions. I had no co-morbidities and did not have any side effects other than a tremor that went away as I tapered, thin skin, and some stomach issues as I tapered that went away. I was on prednisone for 9-10 months. I am not sure where you are in the disease cycle and your journey with prednisone, but nothing is risk free. Evaluating those risks based on your current health is something that you can do with your doctor. Having a rheumatologist who does not agree with your Primary Care doctor is another issue. What did this rheumy think you were dealing with if not PMR? Did they suggest any alternatives to diagnosis and/or treatment?
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@petermccarville
Thank-you for trying to set the record straight. It amazed me how many people thought staying on prednisone for the rest of my life was a better option than trying Actemra. I was nearly talked out of trying Actemra. This happened on another PMR forum that advocated for a prednisone dose increase instead of taking Actemra. The most outspoken person was a self proclaimed PMR expert who was entitled to know things that research says nobody knows. The claim was that prednisone side effects are easy to manage compared to all of the risky side effects of Actemra.
My rheumatologist didn't twist my arm to get me to try Actemra. He simply made the point that I would not know if Actemra would work unless I tried Actemra. My expectations were so low by then that I tried Actemra fully expecting it to fail. I did a slow taper from 10 mg to 7 mg. I tapered by 1 mg per month for the first three months. Then I tapered by 1 mg per week to 3 mg because I wanted to get the "inevitable" flare over with. I needed to stay on 3 mg for 6 months only because my cortisol level was too low which was a prednisone side effect. I needed a long time (about one year) to taper off prednisone because of adrenal insufficiency and not because Actemra took a long time to take full effect.
I think prednisone works great as a short term medication. The long term side effects are proportional to cumulative dose and duration of use in my opinion. Twelve years of prednisone compared to the 6 years I have been on Actemra---I would take the 6 years of Actemra every time and pretend the 12 years didn't happen.