GCA prednisone vs. actemra infusion therapy

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.

One correction to my last post. We were not sent to the ER right after I made a fuss about getting the biopsy. We got the biopsy, she increased the Prednisone and told us to stop taking Tylenol and newly started statin. When he couldn't take Tylenol in the middle of the night the pain became too intense and we were instructed by her nurse to go to the ER if that happened. They very shortly started him on the IV infusions.

I’m more Bob today, March 7, than I was at my previous post. I’m now down to 10 mg Prednisone and a few minutes ago injected Actemra shot #7.

Earlier this morning I walked (Nordic Walking) 90 minutes up and down Austin’s hills. Using the walking poles lessened my concern about balance and they helped considerably getting up the hills. Check Nordic walking out on YouTube!

My husband’s rheumatologist said not to start Actemra when you have a cough or other illness or infection. I have read if you were already on Actemra and you get sick you should stop it until your illness resolves.

Hello again everyone,

I’m curious about Actemra side effects. Methotrexate gave me terrible headaches and Kevzara gave me burning itchy skin nodules. Ajovy (migraine med) gave me hives as well. Perhaps there is the same binding ingredient in Actemra? If I can’t use Actemra, I’m told it will be 40-60 mg prednisone for the possible GCA. Will the biopsy be accurate when on that much prednisone? That was the reason they didn’t do the biopsy in 2016 as I had started on 20 mg prednisone for newly diagnosed PMR.
Also, I was told I didn’t have GCA because my labs were barely abnormal although I was put on 40 mg prednisone a day by the new rheumatologist. I ate everything thing in sight and couldn’t sleep, was anxious and short tempered. Not a lifestyle I want to go through again, 8 years older.
I pray I can try Actemra with no problems.
Thank you for any reply.
Karo89135

I have been on a combination Prednisone/Actemra injection for over a year and have had no side effects that I am aware of. The Actemra will hopefully help me come off of the prednisone completely, though I am not there yet. I had tests done for GCA that came back negative, though I had all of the symptoms, including eye problems. So it made sense to treat for both PMR and GCA. Every day is a new something as I try to get myself off of prednisone.
Good luck. Hope it helps.
Therese

Hi Therese,
Curious why you did infusion vs injections? Your information gives me hope! The biopsy is not always accurate as you know. Love your "new something"
comment. That says it all. Thank you for your reply.
Karo