How often does PMR progress to GCA?

After the GCA diagnosis I started another prednisone taper and also started infusions of Actemra. I had monthly infusions for 2 years and for the past 6 months have been receiving them every other month. I have not had any GCA symptoms since starting the treatment. In another 6 months my rheumatologist will re-access my need for the infusions.

GCA, the black cloud hanging over the head of every PMR patient. My husband and I planned and paid for a bucket list trip to the BVI sailing for 8 days in May. I was diagnosed with PMR 3 months ago and currently tapering (with pain) but I am super stressed at the thought of getting GCA while on a boat in the BVI. The fastest I could make it a hospital would be many hours and would they even know what to do. Any thoughts?

I started with Actemra injections every 2 weeks ... that was 4 years ago. I got off prednisone for a while but I flared and needed 60 mg of prednisone again.

Actemra made it possible to taper off prednisone the first time so I requested to be on Actemra again. My rheumatologist agreed but said I should do weekly injections instead of every 2 weeks.

Weekly injections worked well and I got off prednisone a second time. Eventually I "progressed" to monthly infusions. I have been doing monthly infusions for about a year and I think the infusions work extremely well.

After 4 years of either Actemra injections or infusions ... my rheumatologist thought it was time to stretch the interval between infusions to every 5 weeks instead of every 4 weeks.

Infusions every 5 weeks have been good. I don't know what the next step will be. I'm willing to go 2 months between infusions.

I believe that I will never know unless I try it and see.

Would the doctor give you a high dose of prednisone to take with you? check your Sed rate before you go. You should be able to get a blood test at an emergency clinic somewhere on the cruise to check it again. Just a thought…

I have another autoimmune eye condition that potentially can cause vision loss. I take Actemra but my ophthalmologist says Actemra isn't "optimal" for the condition I have. My ophthalmologist thinks it is only a matter of time before my condition flares again. I always take prednisone with me when I travel "just in case" the need arises.

Charlotte. I had PMR somewhere back around 2011 when I finally got off prednisone 2014 I developed GCA. Rheumatologist that took care of me here in Florida. Never mentioned GCA during my treatment. He too knew very little about PMR and kept reducing my prednisone too quickly so I constantly relapsed. I am afraid that unless you are in the Mayo clinic area most rheumatologist do not know much about GCA. I finally found one here in Florida. However, I am still on prednisone and Actemra. Having the knowledge that one can lead to another which in my case only took six months you are one step ahead of the game. A trip to Mayo does help quite a bit. I did get to Minnesota probably around 2015. They are the best.

I remember only having pain with a flare. Perhaps you can stay on low dose of steroid which would keep you safer while you’re away. Having a prescription for high doses would be good if you had a place to fill it.

What is GCA?

If I find I can't get off the prednisone -- and it seems even tapering down by 1 mg is too much -- I am going to ask my doctor about the Actemra. I live in Canada, though, so am not sure it's available...cost will also be an issue, as I don't have insurance.

Marilynredder2367 - Sorry to hear you ended up with GCA after your PMR...that seems to happen a lot to people, and I absolutely dread it. I'm glad you found a good rheumatologist. As as you pointed out, at least I'm aware of GCA and can be alert for any developing symptoms. My doctor is also trying to taper me off the prednisone too quickly. He thinks I should be down to 10 mg a day now and I'm still at 15 mg because even tapering down by 1 mg at a time is too much. This has been going on for four months now. I live in Canada, so am nowhere near the Mayo clinic. I also don't have a rheumatologist, and am just working with my GP and my naturopath. Unfortunately, most of the naturopath's suggestions I have tried so far don't seem to be helping much. I was taking a curcumin supplement, but had to stop due to digestive upset. I'm now trying MSM, as per her recommendation, along with a homeopathic remedy called Rhus Tox, and am hoping that taking those will help me taper off the prednisone more successfully...but I'm not holding my breath. I'm finding to my great disappointment that the "natural" route doesn't really work for PMR. Maybe it does for some people, but not for me. I'm also making some careful changes to my diet and am currently working at cutting out sugar. Red meat and processed/junk foods are already eliminated. I have to go slowly, as I have a sensitive digestive system (I also have SIBO as well as PMR) so any abrupt changes can result in problems. I'm ready to trade my body in for a new model - lol.