Living with someone on high-dose long-term prednisone

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.

I did have my inflammatory markers measured and saw the results online. They were normal but 2nd round were higher. I want to have them tested again next week along with some more labs including CBD and some auto -immune tests .
Thanks for the kind, comforting words.
Do hope your husband is off these drugs soon.
Best to both of you.

@glinda47
Thank you! We got his inflammation levels back today (CRP and ESR) and they are both normal!! The CRP is the lowest it's been since he got PMR in May 2023 and GCA in Feb 2024. I feel the Actemra is helping him and pray we can get him off prednisone. He was on 80 mg starting late Feb and has tapered to 70 mg but that is still way too high. We'll get there, slowly but surely. She's having him do labs every two weeks now and will continue with the prednisone taper.

I think you're very wise to have more tests done. And I really hope you don't get GCA. Be your own advocate and do your research! Ask lots of questions and if you really feel you need something like a particular test, fight for it. I've had to fight for everything my husband has gotten. Including his temporal artery biopsy. If I hadn't, his diagnosis would have been TMJ and stress headaches (even though he had PMR with all the GCA symptoms other than vision loss, and even though I told this to his former rheumatologist - former is the key word). She just did not want to believe me that he could have GCA which I thought was absolutely insane. Especially with what was at risk. In the end, after his biopsy, after he was resistant to normal treatment to GCA and ended up hospitalized with 1200 mg infusions of methylprednisolone, she finally admitted his was the worse case of GCA she's ever seen. Yet not a single apology for fighting me every step of the way, making me sound like an idiot when I questioned her. We now are very fortunate to have the chief of rheumatology as his doctor. I've decided I will be filing a formal complaint about what happened since I have everything so well documented. Otherwise, this might happen to someone else. I feel my husband, without proper treatment, could have ended up with a stroke, aneurism, blindness or worse. I was watching him deteriorate before my eyes. So fight for yourself!!!!!

So glad to hear of your husband's progress.
What a horrifying story. Omigosh. Why all the fighting to be tested? Seems like docs don't want to test you and I don't understand it. There must be incentive not to test from the labs. That is inhumane at the very least.
Thank the universe you were there to fight for him even when the "doctor" was dead wrong.
She should absolutely not be practicing.
May you both continue to heal from this terrifying experience. He is very fortunate to have you, Isabelle.

My former wife was on high doses of Prednisone (80 mg daily) for Lupus in the 89s and 90s. It didn't bring on rage but did bring on weight gain, which affected her self-image.

@glinda47
Thanks for your kind words. I agree with you about the doctor. Not sure if I mentioned it here or not, but I am planning to put everything together and file a formal complaint (I have lots of documentation which will support my claim). I don't want this to happen to someone else. What if he didn't have me to advocate for him? He was too sick to advocate for himself. Very fortunately we are on the right path with a new doctor who is on top of it all and very knowledgable. She seems to have no issues at all asking for labs and other tests so I'm not sure why the other one seemed to either doubt me or not know much about these diseases. Which would be hard to imagine given she's a rheumatologist.

Seems appropriate to me to file against this woman. She did not do her job which involves matters of life, death and other devastation, such as blindness!!! I notice the reluctance sometimes with docs to run comprehensive labs that can be so revealing of disease, etc. I understand that there are few real specialists in this country, ones who have the passion, humanity, brains and work ethic to really dig in, research and get to the bottom of an illness.
They have saved people who literally did not want to live anymore and had been to 50-60 docs, specialists included and no one could help them.
Thankfully, your experience turned out well.
Wishing you the best.