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@polly223

The rheumatologist wants to start me on methotrexate but I also have epidermolysis bullosa simplex and have always had trouble with my skin; considering that skin issues are a major side effect of methotrexate I don't think he's being particularly very responsible with that recommendation. Here in Canada, biologics are not necessarily always approved for payment by our medical system. I suspect I will have to work hard to convince this doc to advocate for me.
THank you so much for your input here it really helps! It's good to hear yor story.

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Replies to "The rheumatologist wants to start me on methotrexate but I also have epidermolysis bullosa simplex and..."

"Here in Canada, biologics are not necessarily always approved for payment by our medical system. I suspect I will have to work hard to convince this doc to advocate for me."
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Biologics also aren't always approved for PMR by insurance companies in the United States. For RA and other autoimmune conditions they are but not PMR.

My doctor offered to advocate for me to get Actemra approved. I asked another doctor what my chances were for Actemra to be approved. The answer was "not likely" to be approved. The funny thing was that I was relieved to hear it probably wouldn't be approved. PMR experts on the internet were saying Actemra side effects might be worse than prednisone side effects and prednisone was the only option. They discouraged me from trying Actemra. I was glad that Actemra probably wouldn't be approved.

My rheumatologist first made me commit to trying Actemra IF he could get it approved. He didn't want the hassle to advocate for me if I wasn't going to try Actemra. When my doctor informed me Actemra was approved, I wasn't so thrilled. I made the commitment so I tried Actemra. I didn't think Actemra would work so I was very pessimistic about it.

Now I'm very happy with Actemra, I don't seem to have any side effects from Actemra. I was taking at least 5 additional medications to treat prednisone side effects. Not only did I get off prednisone but all those other medications were stopped over time as well.