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

I'm not Therese but I currently do Actemra infusions. I actually started out doing Actemra injections every 2 weeks to "play it safe" according to my rheumatologist. Actemra injections every 2 weeks worked well. I was able to taper off prednisone but it took me a year. Unfortunately, I had a relapse and I needed to go back on 60 mg of prednisone and Actemra was stopped.

Relapses can occur on Actemra. I was disappointed about being on 60 mg of prednisone again. However, the fact that I was able to get off Prednisone temporarily was remarkable.

I wanted to give Actemra another try so my rheumatologist suggested I increase the frequency of Actemra injections to weekly. It took 3 months for me to taper off Prednisone the second time. I went from 30 mg to zero without any difficulty.

Weekly Actemra injections worked extremely well . No relapse occurred the second time I tapered off prednisone. I was able to stay off Prednisone for 2 years while doing weekly injections.

The reason I was switched to infusions was to facilitate surgery on my lumbar spine. An MRI showed a synovial cyst had formed. The surgeon said I couldn't do Actemra injections for a month before surgery and a month after surgery --- 2 months without an Actemra injection seemed impossible.

The idea was for me to switch to a monthly infusion where the dose could be adjusted by my rheumatologist. The injections are a "fixed dose" but the infusion dose could be adjusted upward to the maximum safe dose based on a person's weight. Perhaps with a bigger infusion dose, I could go 2 months between infusions. For me to go 2 months between Actemra infusions was the goal anyhow.

I wasn't able to go 2 months between Actemra infusions. Pain wasn't the reason and I didn't have a relapse. However, my inflammation markers crept up the longer I went between infusions. I was able to go 7 weeks between infusions but my rheumatologist didn't want to "press my luck." I went back to doing a monthly Actemra infusion. My rheumatologist asked me if I wanted to go back to weekly injections since surgery wasn't going to happen.

The interesting thing was that the synovial cyst that was causing a problem disappeared while I did Actemra infusions. The surgeon thought my surgery could be "postponed" since the synovial cyst disappeared.

Spinal synovial cysts are sometimes caused by ongoing inflammation and wear and tear to the joints of the spine due to degenerative diseases like osteoarthritis,. The speculation was that Actemra infusions might have helped this type of inflammation and possibly caused the synovial cyst to disappear. I stayed on monthly Actemra infusions. So far the synovial cyst hasn't recurred and I haven't needed spine surgery.

I don't have any side effects from Actemra so my rheumatologist said I could continue doing Actemra infusions.

Thank you Dad. Sorry it went to Therese.
This is all quite interesting. I've had a kidney cyst rupture, a cyst in my nose rupture and bleed plus bruising under an eye. This was NOT while Actemra but Methotrexate, then Kevzara. Perhaps the Actemra did calm the spinal cyst. I'm to start it this week as I'm quite sure I have GCA , terrible jaw pain, vision issues and headaches. Thank you so much for the explanation !!
This site is a godsend. It sounds like you have a keeper for a rheumatologist. That is half the battle. I assume you had GCA also? There is no way I can do 40-60 mg prednisone again, gain another 35 pounds, have sleepless nights, tachycardia and irritability. At least the election is over..haha. Think I mentioned having a second round of Covid in June too. Yours is a remarkable story indeed.
Thank you again for your time. We are in this together and knowledge is power. After 8 years of this, I'm hoping to learn more, protect my body and live the best I can.
Will know more this Wednesday.
Karo88135

"It sounds like you have a keeper for a rheumatologist. That is half the battle. I assume you had GCA also? There is no way I can do 40-60 mg prednisone again."
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Actually ... I have never been "officially diagnosed" with GCA but I don't need another diagnosis. I already have multiple autoimmune disorders. My rheumatologist needed to submit an authorization request so that I could be treated with Actemra. The diagnosis that Actemra treated was "refractory PMR." The request was approved with the stipulation that Actemra was used "AS IF" I had the diagnosis of GCA."

My rheumatologist says I have a full range of rheumatology problems which collectively are called "systemic inflammation." I needed a moderately high dose of prednisone for 12 years to treat refractory PMR. My other underlying autoimmune conditions were originally diagnosed more than 30 years ago. PMR was just my latest addition and was diagnosed approximately 15 years ago.

My most troubling autoimmune condition was recurrent uveitis. GCA isn't the only autoimmune condition that can cause blindness ... so can uveitis.
https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/uveitis#:~:text=Uveitis%20is%20inflammation%20inside%20your,healthy%20tissue%20in%20your%20eyes.
I have had more than 30 flares of uveitis ... some of the flares were panuveitis. Panuveitis is the worst type of uveitis flare because it affects all parts of the uvea, from the front to the back of the eye. Typically 60 mg of prednisone was just my starting dose and sometimes that needed to be increased.

When Actemra worked so effectively for PMR, I had a massive flare of panuveitis within a week or two of discontinuing prednisone. Currently, as long as I get a monthly Actemra infusion all my autoimmune conditions are well controlled and my inflammation markers are negligible.

I have received excellent care from rheumatologists and several other specialists including an ophththalmologist who prevented me from being blind numerous times.

During the last few months I was on prednisone, I saw an endocrinologist who helped me taper off prednisone after Actemra allowed me to decrease my prednisone. I had secondary adrenal insufficiency resulting in a low cortisol level that was caused by long term prednisone use.

I have now been off Prednisone for close to 4 years. High dose Prednisone was my way of life for more than 30 years. My quality of life has improved greatly since I said goodbye to Prednisone.