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GCA prednisone vs. actemra infusion therapy
Polymyalgia Rheumatica (PMR) | Last Active: 5 hours ago | Replies (27)Comment receiving replies
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.
Replies to "I was switched from Pred to Actemra after 8 months. I don't recall any horrible side..."
My husband has just been given Actemra (injections you do at home.) We picked it up today. I mentioned to the doctor he has had a cough for a couple weeks. He also had a cold. They still prescribed it to start now. I'm worried based on literature I've read about Actemra - that you shouldn't take it if you're sick, have a cough etc. Any thoughts? Have you experienced taking it while you were sick? Or did they tell you to stop it until you were better?
We're new to all of this and it's quite overwhelming. The rheumatologist said my husband has a severe case of GCA (he already had PMR for about 8 months and was tapering Prednisone down from 30 mg to 12.5 mg.) They now have him on 80 mg daily of Prednisone since his GCA diagnosis a couple weeks ago. He had a temporal biopsy done thats came back positive. His ESR rate shot up from 44 to 81 in one day when he was admitted to the hospital. They started IV infusions 1200 mg methylprednisone (I believe that's what it was called) for three days. Now he's back on 80 mg oral dose for a few days. Today he developed a headache and we noticed temple vein swelling. We sent a number of photos to show the doctor his forehead/temples from a couple years ago, a few months ago, at the hospital and now. It is visible. We'll see what she says. Since we are so new to this things like temple swelling become horrifying when you Google "temple swelling." It comes back to GCA with strong warnings that this is a medical emergency. He is being treated so hopefully this newly developed swelling is normal?? As his wife and mother of our kids and grandkids, I feel so responsible for making sure we get this right. I had to fight for the biopsy. Both our GP and our rheumatologist said they didn't think he had GCA. I showed them a list of symptoms I had found and he had all except blindness. I yelled at a nurse on the phone that I was not about to sit by and wait for him to go blind. That got attention and we were sent to the ER. That's when they took blood and he had that high increase in ESR rate and also in CRP rate as well. Any information would be so appreciated.
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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.