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Good morning!
I too am dealing with GCA/PMR since April. I’ve had Lupus, diabetes & Hashimotos for 30 years but this most recent diagnosis has been hard. I was lucky enough to get into Mayo for 2 weeks, albeit through the ER. I’m now recovering well but have to get off this prednisone. The side effects are not good. It was great at the beginning on 60 mg. Finally the inflammation was better so I felt good. My CRP was 266 in the hospital, sed rate 78. Now they are normal. I’m slowly tapering, down to 20 mg/day. Just waiting for my Actemra to be shipped to me so we can see if that will allow me to go under the 20mg prednisone without relapsing. In a little nervous about the taper; had a bad relapse in the hospital when they tried. I just dropped to the 20mg yesterday & already have headaches, more fatigue. I’m hoping that the Actemra works for me.
This autoimmune stuff is tricky. Not sure if these symptoms are the GCA or due to prednisone taper itself. I can’t believe I’m saying this but Lupus flares were easier! My Rheumatologist thinks I’m in remission from my Lupus. It has taken a back seat to the GCA.
Thanks for letting me share!
Replies to "Good morning! I too am dealing with GCA/PMR since April. I’ve had Lupus, diabetes & Hashimotos..."
@momac59 Yes, this “autoimmune stuff IS tricky.” Prednisone plays a very important role in your body. That’s why you are tapered off slowly. If you stop too quickly , your adrenal glands may not start producing the body’s own prednisone and the adrenal glands will fail leading to an adrenal crisis. I agree that being on prednisone can be a real pain but adrenal crisis would be MUCH worse. So, please be careful!
@momac59
I'm sorry you're going through this. I'm doing a fast taper because of an SMM diagnosis subsequent to my PMR diagnosis, all this year. At every decrease I have a few days of moderate pain and additional fatigue before my body adjusts. I've gone from 25mg to 9mg since early May. Hang in there. I hope things get better soon!
@momac59
I have GCA and tapering the Prednisone after being on 40mg for 3 plus months. I am currently on 15 mg and with the help of Tyenne (insurance would not authorize Actemra). So far things are going well. No signs of relapse. Will be on 10 mg next week for 2 weeks and the TBD. My rheumatologist instructed me to take 60 mg of Prednisone at the first sign of symptoms signaling relapse. Wishing you well on your journey.
@momac59 I've been receiving treatment for GCA and PMR for 2 years. I also started at 60 mg of prednisone per day, and I've been taking weekly Actemra injections for most of the 2 years. I finished prednisone 11 months ago, but I'm still taking the Actemra injections. I think my rheumatologist will switch me to every other week for the Actemra injections soon.
You should be aware that it can take up to 3 months for the Actemra to take full effect. Also, it doesn't work completely for everyone, but even if it doesn't work completely, it should allow you to use a lower dose of prednisone or another drug.
The Actemra has worked very well for me. I haven't had any symptoms or flares since I started treatment, and I was fortunate to only have minor issues tapering off of prednisone.
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@momac59 so sorry you have been dealing with this for so long, I know it has to be a constant worry. I could not agree more that the prednisone adds a whole new dimension of worry. It’s a worry to be on it but also a worry to go off it! I tried to get into Mayo but no luck.
Best of luck to you on continuing your long journey!
Deb