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Polymyalgia Rheumatica (PMR) | Last Active: 2 days ago | Replies (8)
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I've been getting Actemra infusions for 10 months, now. My rheumatologist and I have never discussed the duration that I would take them. It was my decision to start the infusions. It was a matter of 'pick your poison'. I could count the side effects that I had from the 7 months that I was on prednisone for PMR/GCA, on two hands. Within a couple of months of starting the infusions, I started feeling so much better. The fatigue dissapated and I was able to resume activities, such as golf and water aerobics.
There is a study in England that shows, patients who were on Actemra for only a year, had a higher incidence of relapse. https://academic.oup.com/rheumap/article/8/2/rkae054/7649323
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I love that survey from the UK. The patients who responded to the survey are members of a PMR/GCA forum in the UK that I used to belong to. Only people with GCA are allowed to be treated with Actemra in the UK. The mantra was that prednisone was the "only option" for PMR. For GCA, Actemra is limited to one year with no possibility to restart Actemra if a relapse occurs after stopping Actemra.
When I told members on the UK forum about my experience with Actemra, the general folks on the forum seemed interested. The monitors for the UK forum said my experience with Actemra to treat PMR wasn't pertinent to people in the UK. One of the monitors told me that it would be okay for me to take Prednisone for the rest of my life because Actemra was too risky. I was discouraged from even trying Actemra.
I'm glad some people in the UK have received treatment with Actemra. I pity those who received Actemra and had good results but they relapsed when they had to discontinue Actemra after one year.
I also had to discontinue Actemra in 2020 approximately one year after starting Actemra. There were supply chain problems that caused a shortage of Actemra in the USA. Seriously ill Covid patients received Actemra to control the inflammation caused by their Covid infection. In any case I relapsed when Actemra was stopped because of a supply shortage.
I had to go back on 15-20 mg of Prednisone again for about 4 months until supplies of Actemra improved. My pain returned and I deteriorated while I was on Prednisone. Fortunately, after restarting Actemra, my pain improved and I felt better again.
Even though I was on prednisone again for 4 months ... it only took me about 4 weeks to taper off Prednisone after Actemra was restarted.