GCA prednisone vs. actemra infusion therapy

I was switched from Pred to Actemra after 8 months. I don't recall any horrible side effects. For me, not so much the side affects of Actemra but more what would I end up getting because of it. Any disease that your immune system fights is now in the table. Cancer, shingles, flu, pneumonia, etc. Of course the incidents are low but it's always on your mind. And make sure you have all of the standard vaccinations before you start. I was told to take the new shingles vaccine but it is 2 shots a few months apart if I remember correctly. I was out on Actemra right after the first shot. Within a few weeks I had shingles. And when you have shingles you can't take the vaccine. So I got shingles 8 more times before I had to do the 2 shot set all over again. Luckily the episodes were not bad because I had one shot in me. I was on Actemra 3.5 years when I was cleared and got off. I've been free of GCA and PMR since Nov 2021.

Thank you for your information. Why did you decide to switch? Did your doctor encourage you to change?
Sorry you got shingles; I have heard it is painful. Are you glad you did?
It is encouraging to know that you are free of GCA. I am not sure what to do about switching. I am on 20 mg of prednisone now, and I hate the side effects. The side effects of Actemra sound serious. Thanks again.

I have been on a monthly infusion of Actemra for about a year. I started with Actemra injections every 2 weeks on Jan 1st, 2019. In four years of taking Actemra, I haven't had any serious side effects directly linked to Actemra.

I had many problems during 13 years of prednisone use. I developed a long list of medical conditions ... some of which required emergency room visits and hospitalizations. It was one problem after another.

I continued to have medical problems after Actemra was started but my symptoms stopped. I'm probably in remission but I still do Actemra infusions.

I was able to get completely off prednisone in about a year after Actemra was started. Not only did I taper off prednisone, I was able to discontinue several medications that were used to treat prednisone side effects. My overall health and well being has improved dramatically since Actemra was started. I no longer have some of the prednisone related health conditions I once had.

I hope to never need prednisone again. I haven't had any problems with infections or anything serious while on Actemra. Side effects from Actemra are possible but I think I'm better off being on Actemra compared to prednisone.

My rheumatologist doesn't know when I will be able to stop Actemra but at least I know Actemra can be stopped. People can get stuck on prednisone and it isn't easy to come off of it.

Two reasons why I switched, both came from my doctor. First, I already had Osteopenia. Continuing Pred would have just made it worse. Second, I had a relapse on Pred and the doctor believed that Actemra was better at keeping things stable. As I am sure you read on here many people who are tapering off Pred have relaspses or reoccurences. I didnt have that on Actemra. Luckily my cases of shingles werent too bad, but eight times was not fun.
Anyway, as far as switching, you just have to pick the devil you can deal with because they both certainly have their drawbacks.

I have one more question. Do you know what the lower lever of prednisone you were on before you switched and did you relapse on the prednisone? I am on 25 mg now and don't know how low I can go.

Thank you.

My rheumatologist wanted me to taper my prednisone dose as low as possible before starting Actemra. I already knew where problems developed so I didn't spend much time doing a slow taper lower. I could tolerate the pain on 10 mg but 15 mg was better. Decreasing from 10 mg to 7 mg made the pain worse and inevitably I would go back to 10 mg. I considered 10 mg to be my "lowest effective dose" at the time Actemra was started. Bear in mind it took me 12 long years to get to 10 mg. Most of the time I was between 20 to 30 mg of prednisone or more.

The moderately high dose of 25 mg is not a good place to be in the long run. It might be fine if you can get to less than 10 mg relatively quickly as in a couple of months and not a couple of years. Even 10 mg isn't good in the long run.

My rheumatologist said if I only needed 3 mg of prednisone he would not have been overly concerned. He said that he never would have suggested Actemra if I only needed 3 mg. In any case, 10 mg was my prednisone dose when Actemra was started.

I tapered cautiously by 1 mg per month for the first 3 months after Actemra was started. I got to 7 mg and didn't have a hint of more pain. I threw caution to the wind and tapered by 1 mg per week until I reached 3 mg of prednisone.

When I reached 3 mg, I asked my rheumaologist what I should do next. I had to stay on 3 mg for six months until my adrenal glands increased their production of cortisol. My main problem tapering off prednisone was due to adrenal insufficiency caused by long term prednisone use. When my adrenals were producing "adequate" levels of cortisol, my endocrinologist said "it might be safe" to stop prednisone. I went from 3 mg to zero in a couple of days.

There is no correct way to taper. It depends of many factors and as everyone says, "we all all different."

I believe I was down around 5mg. I did relapse on Pred but I was trying to get off of it as quickly as possible. It would make me horribly tired. And my issue at that time was more GCA than PMR. The PMR seemed to fade fairly quickly after I started Pred, but the GCA went on for 4 years. The other thing was that along with my relapse I was also dehydrated, at least that is what the blood tests showed after I ended up in the hospital. Just remember, we all have different reactions to medicine, tolerance to pain and so forth. When I was tapering, my biggest problem was being tired. I could stay in bed on and off for 3 days sometimes.

I was on 60 mg/day of Prednisone due to very high levels of inflammation due to PMR and/or non-cranial GCA (doctors are unsure). The most noticeable side effect was severe insomnia, which became life threatening after several months.

I began weekly injections of Actemra simultaneously with starting a 6-month taper of the Prednisone, and have been completely off Prednisone since October 2023.

For me, there are no physically obvious side effects of Actemra. However, my blood tests show moderately increased liver scores (ALT and AST), albeit still in the normal range. My C4 complement (part of immune system) is also very low - this type of immunosuppression is normal for those on Actemra, but is still a danger. My white blood cells also tend to be on the lower edge of normal.

Overall, for me the side effects of Actemra seem far less problematic than Prednisone, especially for long term treatment. I'm told the main issue of concern with Actemra is the liver and monthly blood tests are recommended to monitor liver status, at least for the first six months or so. There is also of course the issue of immune system suppression which Prednisone also has.

Prednisone has good and bad effects but feel that the side effects would keep me from taking it.

I’m Bob …

My GCA has caused blindness in one eye and reduced vision in the other (stroke in eyes.) I started at 40 mg Prednisone, progressively tapered to 15 and started Actembra. I have done four injections over six weeks at two week intervals and had no adverse effects.

I have detested/hated the effects of prednisone, fatigue- balance-swelling, etc. and have lived for Actembra to make life better. Too soon to tell but the combination of reduced Prednisone and starting Actembra has made life with greatly reduced vision a little less miserable 😩