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Actrema advice

Posted by jmdoherty @jmdoherty, Mar 2, 2025

Just got GCA. Have had PMR for several years. Want to know how others treat GCA

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

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granc | @granc | Mar 19, 2025
In reply to @dadcue "The safety profile of Actemra alone is probably better than prednisone alone. The difficulty is Actemra..." + (show)
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The safety profile of Actemra alone is probably better than prednisone alone. The difficulty is Actemra may not allow you to get off prednisone. You could wind up being on both prednisone and Actemra for a certain amount of time simply because prednisone can't be stopped abruptly.

Prednisone suppresses your immune system and increases your risk of infection. Actemra suppresses your immune system and increases the risk of infection. I had a tendency to get infections whenever I took prednisone in combination with any other medication that suppressed my immune system. My rheumatologist would say "too much immunosuppression" caused the infection instead of saying prednisone caused the infection or the other medication caused it. She said it was the combination of both medications.

Unfortunately, COPD increases your risk of a lung infection. I can understand your concern about adding Actemra to the mix. I don't know what you should do. Doctors face tough medical decisions all the time. That is why I never wanted to be a doctor.

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Thank you so much for your reply. I appreciate any and all information. The combination of being on Prednisone and Actemra is what is really scaring me. We have had a really high incidence of respiratory infections in our area and I certainly don't want an RSV, influenza or pneumonia.

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jnagrock | @jnagrock | Mar 24, 2025
In reply to @dadcue "I can only say that Actemra enabled me to successfully discontinue Prednisone after being treated with..." + (show)
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I can only say that Actemra enabled me to successfully discontinue Prednisone after being treated with Prednisone for 12 years. I now do a monthly Actemra infusion with no discernible side effects.

I never want to go back to Prednisone ... simple as that. I will gladly remain on Actemra for as long as it continues to work.

How I feel currently is much better compared with when I was on Prednisone. Maybe the first year or two of Prednisone wasn't that bad. It was all a downward decline in my quality of life after that. Now my quality of life is improving.

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What are the side effects from Actemra?

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Mike | @dadcue | Mar 25, 2025
In reply to @jnagrock "What are the side effects from Actemra?" + (show)
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What are the side effects from Actemra?

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I personally haven't had any serious side effects during my 6 years of taking Actemra. I had transient neutropenia and mildly elevated liver enzymes but my rheumatologist didn't see any need to stop Actemra.

It would be interesting if people posted what side effects they experience on Actemra and Kevzara. People on this forum don't seem to report too many side effects relative to prednisone side effects.

Not being able to stop Actemra without my symptoms returning concerns me but at least Actemra doesn't seem to cause me any additional problems.

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jeff97 | @jeff97 | Mar 25, 2025
In reply to @dadcue "I personally haven't had any serious side effects during my 6 years of taking Actemra. I..." + (show)
Profile picture for Mike @dadcue

I personally haven't had any serious side effects during my 6 years of taking Actemra. I had transient neutropenia and mildly elevated liver enzymes but my rheumatologist didn't see any need to stop Actemra.

It would be interesting if people posted what side effects they experience on Actemra and Kevzara. People on this forum don't seem to report too many side effects relative to prednisone side effects.

Not being able to stop Actemra without my symptoms returning concerns me but at least Actemra doesn't seem to cause me any additional problems.

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I've been taking Actemra injections for 7 months, and I haven't had any side effects. I'll taper to 5 mg prednisone in 3 days.

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thereselefever | @thereselefever | Mar 25, 2025

I was doing great on Actemra with no side effects. Then my insurance stopped covering it. I am in the process of trying to switch from an injection to an IV. Hoping they will cover this since it is considered medical and not pharmaceutical.

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