GCA conserns

I'm 69 years old ... 70 will happen way too soon.

I'm making up for the time lost during my 12 years of PMR and prednisone. I was thinking about assisted living and long term care for my retirement years. Now I'm planning to travel to Europe on a trans Atlantic cruise in the spring of 2024. That will happen after going to Florida for the month of January 2024. I live in Iowa so winter is brutal here especially in January.

I get my infusions of Actemra through the VA health care system. They are making arrangements for my infusion to be given in Orlando in January. I don't worry about my dose or anything. My doctor just asks me how the month went and writes for the dose that is given to me at my next infusion. The nurse doing the infusion tells me the dose if I ask.

I'm truly a risk adverse person. However, after 4 years of Actemra, I haven't had any serious infections or other health concerns. There is no comparison with my 12 years on prednisone which were characterized by infections, emergency room visits and hospitalizations.

I still want to get off Actemra for fear that my luck is going to run out eventually.

I think it’s a wonderful thing that you feel up to getting back out. I am also 64 and PMR has definitely impacted my desire to go just because when I started tapering prednisone my pain came roaring back. My rheumatologist and I are discussing my options but I think “feeling” like going out again is a great sign of healing. Good luck with reducing Actemra—sounds like you could taper that too. Blessings!

Thank you for your post. I am soon to start on Actemra alongside Prednisolone, at least to start with. Your feedback on the effect it had on you are very encouraging, especially as regards catching infections. Here's hoping I'll be so lucky,

I agree with you regarding the fact that "feeling like going out" is a sign of getting better. At the moment I am on 40 mg Prednisolone (GCA relapse) and will soon start also to have Actemra. I am feeling so very much better with the treatment and have actually been "getting out" quite a lot over these past few weeks. I do hope you soon will feel the same way. Good luck with it all.

"Feeling like doing something" is a great sign of healing. That is so true. I fell into a pattern of "taking it easy" for fear of having a flare. I was telling myself that I can't do anything ... it became my lifestyle to do practically nothing that I enjoyed simply because I enjoyed doing it. I kept working out of necessity but that was exhausting. My quality of life wasn't good.

Now I am discovering what I can still do. I feel like a kid again learning to do things for the first time. I'm almost 70 years old so I know I will never be a kid again. I'm being "supervised" like a kid by a physical therapist who thinks I'm stubborn. She keeps telling me "if it hurts don't do it" but I tell her it doesn't hurt.

It does hurt a little bit but I expect it to hurt. A good night of sleep takes care of the muscle soreness. I know my adrenals are working and my cortisol level is good.

I hope Actemra works for you. Being optimistic is important I think. I lost all hope that I would ever get off prednisone. I was being told prednisone was the "only option" for PMR/GCA.

I wasn't feeling optimistic at all when I tried Actemra. I reluctantly agreed to try Actemra just to get past the inevitable flare. My rheumatologist only said Actemra "might work" not that it would work. He waffled about doing an infusion or a weekly injection until he finally decided on an injection every 2 weeks to "play it safe."

What happened in the years that followed is amazing to me. There wasn't the instant relief like prednisone provided. There was just a slow but steady improvement in my overall health and well being. I was discouraged because of a couple of setbacks. At one point after getting to zero prednisone, I needed 60 mg again and Actemra was stopped while I tried a different biologic. It was because of something unrelated to PMR/GCA and it surprised everyone -- including me.

I truly don't want to give "false hope" to anyone but you do need some hope.

Thank you for your words, which have given me hope. I am so glad to hear about your experience with Actemra. I believe that approaching the treatment with a positive outlook can help one have a (more) positive experience. I have to wait a couple of weeks until the rheumatologist sees the results of a battery of blood tests I have to have done before starting (if indeed the results will allow it). I started the whole journey in October 2018 with PMR and went into remission in December 2020. I was diagnosed with GCA in February 2022 and tapered to almost stopping point about a month ago. However, throughout treatment for GCA, my CRP count was very inconsistent and almost always too high. Therefore, it was decided that I should have a PET scan to see what was going on and they found that I have large-vessel vasculitis (GCA) in the aorta area and that it has quietly led to an aortic tear (b-dissection) - I have no symptoms and in fact since being on 40 mg Prednisolone these last 3 weeks, I have been feeling very well. I do hope that I can continue to feel like this when (if) on Actemra. My rheumatologist has said that she thinks I'd need to be on Actemra for 1-2 years. I am now also being checked by the Cardiological Department to keep an eye on the aortic tear. All the best to you.

I have GCA on 40 ml of prednisone for a month. Feeling great but concerned. What was your relapse like?

While being treated for GCA first time round, I didn't feel really bad - no pains, for example - but I always felt more or less tired. It is possible I should have been on higher does of the drug for longer intervals as my CRP count, which fluctuated a lot, was always too high. I should have been out of the drug about a month ago but again my CRP had gone up. Therefore, it was decided that I should have a PET scan to try ascertain what was going on. It showed all the things I mentioned in my first post. I have now been on 40 mg Prednisolone for three weeks and in that time, I feel better than I have for a very long time - I'm full of energy and have a hard time believing I am ill. The only side-effect I have is that I cannot sleep for long but I just get up and get things done. It doesn't seem to affect my next day. I am so hoping that when I start on Actemra, this state will continue. All the best to you.

Thank you for responding. I also have a lot of energy and cannot sleep at night. My biggest complaint is that my face is swollen, and I look disfigured. Also, my taste buds are gone, everything tastes blab, and I love to cook. My rheumatologist suggested infusion therapy; she didn't say Actemra, and I said let's wait. I will be interested in hearing about Actemra when you start it.