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My introduction to PMR came from a friend that was just going through Giant Cell Artertis (GCA) treatment. She was not diagnosed with PMR by many doctors for many years and eventually became GCA. She now is considered both PMR and GCA.
Do any members here currently have or have had GCA? ? My friend with GCA has had GCA come back a few times this year when she is on low to no dose of Prednisone. Is there any feedback that suggests staying on Prednisone at minimal dose to prevent GCA may work? Or any other treatment besides prednisone may help?
I read that 20% of PMR patients may have GCA at some time. So I am asking for my friend and for me.
Replies to "My introduction to PMR came from a friend that was just going through Giant Cell Artertis..."
@leonalawrence My PMR and suspected GCA appeared simultaneously. My rheumatologist put me on 60 mg. of Prednisone for 6 weeks, them I started my taper. When I got to 10 mg., I had a flare and my GCA symptoms started to return. I was also having the classic PMR pain. I discussed Actemra infusions with my rheumatologist. I learned a lot about Actemra in this forum from others. She agreed to prescribe it. That was in Jan. 2025. I get the infusions every 4 weeks. I have been able to taper to 1 mg. (I'll be done in a week) without any issues. I was very active before these diseases. Within 3 months of starting the infusions I felt remarkedly better. I wasn't back to my old self, but I didn't have any pain or fatigue. I was able to resume pickleball and was able to play golf more than one day a week. I just returned from an 11 day trip to Iceland. I did a lot of walking. Although my stamina hasn't completely returned, I feel like I'm getting close to my pre-PMR/GCA stamina.
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@leonalawrence
I am fortunate my GCA friend suggested I get checked for PMR with Rheum doc. I am very thankful for that advice as my own doctors did not look at PMR as an option for my pain. I had a good conversation after my diagnosis with my general doc about things he needed to know for to help him diagnose PMR.
The big item we discussed was PMR does not always need to have high inflammation numbers in blood work for diagnosis. My numbers were high but not "off the chart".