Living with someone on high-dose long-term prednisone

I was the person on high dose prednisone. I was easy to live with. However, people would often ask me how much prednisone I was taking. That was my hint that I better settle down a bit.

Actemra got me off Prednisone but it took me about a year to taper off prednisone. Nobody asks me how much Actemra I'm on.

Hello @isabelle7, I know it must not be easy being a caregiver for your husband with his PMR and GCA. I'm wondering if you might want to scan through some of the discussions in the Caregiver Support Group to see if you find some suggestions while you wait for members with experience to respond. Here is the link for the Caregiver Support Group with a list of all of the discussions - https://connect.mayoclinic.org/group/caregivers/?search=#discussion-listview.

I'm so sorry you've had to go through this too. That's funny about people asking how much you're on. LOL My husband's metabolism is on over-drive. He's jittery which has to be so annoying. I see his hands shaking and want to cry. It comes on about an hour after taking prednisone and lasts for hours, until his evening dose. The evening one isn't as bad. Then again he takes a lower dose in the evening. 40/30 mg now.

Wow!! A year even with Actemra? That's brutal! The one good thing is he has no pain. And that is worth a lot after having seen what he went through. I honestly thought he might not make it through this on his darkest days. It was a very wise ER doctor that got things moving in the right direction. Had we listened to his rhumatologist I have no idea what would have happened. Suffice it to say we've found a new one we're very happy with. We lucked out and got the chief of rhumatology (after she found out what we went through.) He has a really bad case of GCA that was very resistant to treatment. It took IV infusions and splitting his daily dose of prednisone to get him on track.

Are you still on Actemra? Our new rhumatologist commented last week that he could be on it for the rest of his life???

Thank you for the link! I will definitely check that out.

I was on moderately high doses of prednisone for 12 years ... in the 20-40 mg range most of the time.

Actemra would have worked sooner had it not been for adrenal insufficiency which caused a low cortisol level. Actemra allowed me to taper from 10 mg to 3 mg in a couple of months. I had to stay on 3 mg for 6 months until my cortisol level improved.

When I tapered off prednisone the first time, I was doing Actemra injections. I had a relapse and needed to go back on 60 mg of prednisone again. The relapse was unexpected . The relapse wasn't GCA but another eye condition that potentially can cause vision loss.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
Actemra was stopped by my ophthalmologist and another biologic was tried for a couple of months. I wasn't able to taper off prednisone while on the other biologic and got stuck on 15 mg of prednisone again. My rheumatologist asked me if I wanted to try Actemra again. I couldn't wait to try Actemra again and it took 2 months to go from 15 mg to zero the second time. I wasn't on prednisone very long the second time so my adrenal function wasn't as suppressed.

Long term prednisone wasn't good for me. I'm much better on Actemra. I still do a monthly infusion of Actemra. A monthly infusion seems to work better for me compared with the Actemra injections. I haven't had any relapses in more than 2 years. My rheumatologist isn't inclined to stop my monthly Actemra infusions anytime soon.

@dadcue
Thank you for sharing your experiences with prednisone and Actemra. It was very helpful. I am going to talk to my husband's rheumatologist to ask if she thinks the monthly infusions would be better than the shots in helping him to taper more quickly from the high doses of prednisone. He's still on 70, was on 80 since the last week of February.

Wow! You were on 20-40 for 12 years? That is a very long time. I'm really glad you were able to get on Actemra and that it helped as much as it did. His new rheumatologist (who we trust) said he could stay on Actemra all his life and it wouldn't hurt him but that it's a very different story with prednisone. So my goal is to get him tapered off these high doses as soon as safely possible.

@dadcue
Could you please confirm that the first time you were on Actemra you were doing injections, not infusions?
And that once you started infusions you were able to taper to no more prednisone and have not since relapsed (while still doing monthly infusions of Actemra).

I sure hope things get better for you and your husband, Isabelle. What a nightmare. As an individual who suffers from severe anxiety disorder, I can't imagine taking any prednisone of any other drug that causes anxiety, yet here I am a few wks away from an ultrasound, after which I will prob hear I have PMR. Then to have to deal with the possibility of GCA. I'll be 75 soon. Not sure I want to fight with the arsenal available. Can't imagine the high doses of steroids that have to be administered for GCA and also taken afterwards. I'd probably have to be hospitalized for the anxiety alone.
At any rate, this is life and we do our best.
Again, hoping for the best for both of you.

My very first injection of Actemra was on January 1st, 2019. I thought it was appropriate to start anew. I wasn't overly optimistic about Actemra. My rheumatologist waffled about how to start Actemra. The only discussion we had before starting was that Actemra was something new and I would get a monthly infusion. That was contingent on me being willing to try it if ... (BIG IF) ... my rheumatologist could get it approved for me. I was diagnosed with PMR only and not GCA. I actually have been diagnosed with multiple autoimmune disorders but never GCA. I had some of the symptoms of GCA but not the diagnosis. I still haven't been diagnosed with GCA. I had plenty of facial pain and vision disturbances for 30 years but it wasn't GCA. The facial pain was a vascular problem combined with a nerve problem and diagnosed as trigeminal neuralgia or sometimes called the "suicide disease."
https://www.urmc.rochester.edu/neurosurgery/services/conditions/trigeminal-neuralgia.aspx
Prednisone helped this condition too but it isn't usually treated with prednisone.
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Actemra was approved for me with the recommendation that I would be treated "as if I had GCA." When my rheumatologist was deciding how to start me on Actemra, he said I should do an injection every 2 weeks to "play it safe.' I can't say that instilled a lot of confidence that Actemra would help. My rheumatologist said the research at the time showed very little difference between doing weekly injections versus injections every 2 weeks for the treatment of GCA.

When I did injections every 2 weeks I was able to taper off Prednisone but it took me a year. If PMR symptoms were the only concern, I could have tapered off in 3 months. My issue was mostly the low cortisol level which was a side effect of long term Prednisone use.

When I tapered off the first time it didn't last very long. One of my other autoimmune conditions (uveitis) flared up. It was a massive flare of uveitis called panuveitis and it was the worst uveitis flare that I can recall. Actemra was stopped in favor of a different biologic and 60 mg of prednisone. The uveitis flare resolved but when I tapered my Prednisone dose down to 15 mg, all the body aches and pain recurred. I'm not sure what caused all the pain but it was the same pain I had for 12 years when my Prednisone dose was too low. In any case, my rheumatologist implored me to give the new biologic a chance to work. I needed to give the other biologic 3 months to work. Three months was all I could do. Actemra was tried again except I did weekly injections instead of every two weeks. I was off prednisone the second time in less than 3 months

Monthly infusions were initiated mostly because of supply chain problems during Covid. I could not get any injectable doses of Actemra. I had a major flare and was back on Prednisone. When Actemra was available again, I was restarted on a monthly infusion and the pain stopped quickly in a matter of a few weeks.

Getting PMR doesn’t mean you’ll get GCA. Most people don’t. Unfortunately my husband did. Have you had your inflammation levels checked? Those were the labs they first did to diagnose him with PMR. Hopefully you won’t have it. I don’t know if his reaction to prednisone is common. For him it seems to rev up his metabolism and causes weight loss where for most people it causes some weight gain. I wish you the best.