Facial puffiness? PMR/GCA on Prednisone/Actemra

Posted by isabelle7 @isabelle7, May 4 6:41pm

My husband has PMR since May 2023 and GCA since February 2024. He’s on 50 mg of prednisone and weekly shots of Actemra since developing GCA. Was on 80 mg tapered to 50 mg. Noticed recently that his face is very puffy as well as his eyes. Should I be concerned?

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Hi @isabelle7, I think this is something you might want to discuss with your husbands doctor. It sounds like it could be a side effect of the prednisone. Here is some information on the topic that hopefully will provide some suggestions.

"Will prednisone moon face go away?
Steroid drugs, such as prednisone, can cause weight gain in the face. They can make a person's face look swollen, puffy, and round. These symptoms usually go away once a person stops treatment. A lower dosage of steroids may also reduce the symptoms."
-- Moon face: Meaning, pictures, causes, and how to cope: https://www.medicalnewstoday.com/articles/moon-face

How is your husband doing? Is his pain under control with the treatments? Can you discuss the symptoms with his doctor?

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@johnbishop
Thank you! I will check out the link and will contact his doctor this week.

He has been pain free which is a blessing. He has trouble sleeping more than 5 hours a night. Hoping that improves as he tapers.

Thanks again!!

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After Actemra was started ... what was the prednisone tapering recommendation that your doctor suggested? It takes about 6 weeks for Actemra to be effective so the tapering process starts slowly but I found that I was able to speed up the tapering process substantially after 6 weeks.

A high dose of prednisone is considered to be anything over 30 mg for most people. Side effects are probably inevitable at high doses. "Moon face" and weight gain are obvious side effects.

There are many other possible prednisone side effects that aren't so obvious and sneak up on you. Blood pressure should be monitored frequently and this can be done at home. I wasn't so diligent about checking my blood pressure until I got extremely short of breath and perspiring profusely. I thought everything was fine because I was pain free. I felt reasonably well until I couldn't walk up a slight incline without stopping to rest. Even a shower was exhausting. When I reported an irregular pulse to my primary care doctor, he ordered an EKG which said I had left ventricular hypertrophy (LVH). That was when I was told to check my blood pressure more often. Only then did I discover my blood pressure was extremely variable and sometimes it was in excess of 210/110. Prednisone can impair many physiological regulatory mechanisms that the body relies on.

"Fluid retention is one of prednisone's most famous side effects. "Moon face is common, which is swelling in the face that can occur after you've been on steroids for a long time." It may be common but it isn't normal.
https://health.clevelandclinic.org/8-prednisone-side-effects-how-to-minimize-them
Reporting all symptoms to your doctor that don't seem right is the best thing you can do.

REPLY
@dadcue

After Actemra was started ... what was the prednisone tapering recommendation that your doctor suggested? It takes about 6 weeks for Actemra to be effective so the tapering process starts slowly but I found that I was able to speed up the tapering process substantially after 6 weeks.

A high dose of prednisone is considered to be anything over 30 mg for most people. Side effects are probably inevitable at high doses. "Moon face" and weight gain are obvious side effects.

There are many other possible prednisone side effects that aren't so obvious and sneak up on you. Blood pressure should be monitored frequently and this can be done at home. I wasn't so diligent about checking my blood pressure until I got extremely short of breath and perspiring profusely. I thought everything was fine because I was pain free. I felt reasonably well until I couldn't walk up a slight incline without stopping to rest. Even a shower was exhausting. When I reported an irregular pulse to my primary care doctor, he ordered an EKG which said I had left ventricular hypertrophy (LVH). That was when I was told to check my blood pressure more often. Only then did I discover my blood pressure was extremely variable and sometimes it was in excess of 210/110. Prednisone can impair many physiological regulatory mechanisms that the body relies on.

"Fluid retention is one of prednisone's most famous side effects. "Moon face is common, which is swelling in the face that can occur after you've been on steroids for a long time." It may be common but it isn't normal.
https://health.clevelandclinic.org/8-prednisone-side-effects-how-to-minimize-them
Reporting all symptoms to your doctor that don't seem right is the best thing you can do.

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@dadcue
That is very good to know about Actemra becoming more effective to help tapering after 6 weeks. We're close to that now. So far the doctor is having labs every two weeks, they've been good, so she's tapered 10 mg each time. We started at 80 mg, we're now at 50 mg with another test tomorrow.

Interestingly, while he is getting the "moon face" he has actually lost weight since being on prednisone. A total of about 20 pounds.

Thanks for telling me about monitoring blood pressure. I have a cuff here so I'll do that. Last time he was at the doctor it was good. Fingers crossed it stays that way. Oh my gosh!! 210/110!! That is high! So scary.

Thanks for the link. I'll read it. "It may be common but it isn't normal" is so true.

I appreciate your feedback and I will report his side effects this week. And will read the article you sent.

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