Has Prednisone/Actemra worked to completely heal GCA?

I'm currently doing Actema infusions for "refractory PMR." I was on prednisone for more than 12 years for PMR alone without ever being diagnosed with GCA. There might have been the suspicion of GCA but it was never diagnosed.

Since Actemra isn't FDA approved for PMR, my rheumatologist had to get Actemra approved for use in my case. Actemra was approved by a medical panel with the recommendation to treat me with Actemra "as you would treat a patient with GCA."

I am a hybrid of several autoimmune disorders. I was able to get off prednisone completely after Actemra was tried. My first attempt to taper off Prednisone was complicated while I did Actemra injections. My second attempt to taper off Prednisone was successful. I have been prednisone free for 3 years while doing monthly Actemra infusions.

I wouldn't say I'm healed because I still do Actemra infusions. I can say my quality of life has improved immensely since discontinuing prednisone. Being off prednisone makes Actemra worth it to me. However, my out of pocket expense doing Actemra infusions is $0 at the VA.

I was able to get off Prednisone and five other medications that were treating Prednisone side effects.

I recently stopped warfarin too. I was taking warfarin for life because of a massive, multiple and bilateral pulmonary embolism that was called "unprovoked." The pulmonary embolism was called idiopathic when I was on a high dose of prednisone during a severe infection. It took some convincing but I talked someone into discontinuing warfarin because I have been off Prednisone for the last 3 years without having any severe infections in a long time. My overall risk of another pulmonary embolism has decreased.

@dadcue

I had no idea you've been through so much!! And for so long. I'm so sorry.

I am very happy to hear you were finally able to be free of prednisone That stuff, while lifesaving, also wreaks havoc. So far so good with tapering, though I am insisting on slowing down tapering now that he just went down to 20 mg. She wanted to go to 15, I said 18, she said 17.5 and we settled on that (since we can split 5 mg pills.) Do you know if they make 1 mg of prednisone? So far we've had 20 mg, 10 mg and 5 mg pills. As we taper lower I'd like to have 1 mg if they have it. I'd rather it take just a little longer than having a relapse. She is assuring me he's able to taper more quickly with Actemra. Last time we tapered on PMR to 12.5 he developed GCA. I mentioned that and she said not to worry, he's got the thing and there's nothing more to get. My point is I don't want him to start having symptoms and have to start increasing prednisone again. That is my hope anyway.

I'm so glad you were able to get off the drugs for prednisone side-effects and the warfarin. It sounds like you are headed in the right direction. I'm so glad to hear Actemra is a good choice.

Yes ... there are 1 mg tablets of prednisone. I didn't need the 1 mg tablets for 10 years after PMR was diagnosed. I wasn't able to get much lower than 20 mg during that period of time.

You are doing well. I always say there isn't any best way to taper off Prednisone. There are too many other factors to consider when tapering off Prednisone. No two people are the same. Duration of Prednisone use and cumulative dose are important. However, relative to being on a moderately high dose for 10 years, you are doing okay ... I think.

If Actemra is working, a faster taper is possible though. In my case, after 12 years of prednisone use before Actemra was tried, there wasn't much of a rush. It took me about 9 months to get off Prednisone the first time I tried going from 10 mg to zero. My second attempt a year later only took 3 months going from 15 mg to zero.

@dadcue

Wow! I'm sorry it took so long to get PMR under control. I just wonder if you also had GCA and if you did, scary if it wasn't diagnosed.

Just to clarify. It's my husband on prednisone not me. And he's been on prednisone for over a year. Diagnosed with PMR in May 2023, 30 mg prednisone, tapering to 12.5 mg, then developed GCA in Feb 2024 and up to 80 mg, tapering now to 17.5 mg. He started Actemra a few months ago and it's going well. He's had lots and lots of prednisone side-effects, probably the worse being 3 compression fractures from developing steroid-induced osteoporosis. It's so bad his doctors won't let him do any bending at the waist, he's not a great squatter and doesn't have the best knees so that doesn't help, and he can't lift anything weighing over 5 pounds. So I'm doing just about everything but that's OK. I signed up for this 43 years ago when I said "in sickness or in health."

I really appreciate your feedback on this topic and it's good knowing that everyone is different and we can just keep trying to taper and hope for the best. Thanks for letting me know there are 1 mg tablets. We might end up needing them.

dadcue is the expert in the field of prednisone and Pmr related illnesses. I did want to point out that he mentioned he is still on the Actemra. It apparently worked for someone on prednisone for 12 years but he is still trying to discontinue the Actemra.

@tuckerp

I definitely got the feeling that Dadcue is the king of prednisone and PMR. He did say he's still on Actemra. From what my husband's rheumatologist told us, he will use Actemra to help taper the prednisone and then will likely be on Actemra for another two years to complete the treatment for giant cell arteritis. I wonder if Dadcue could have had some form of GCA given how long he needed prednisone. However, I don't know enough to know if others have been on prednisone that long for just PMR. I say just PMR but I do not minimize how awful it is. I saw my husband suffer through that before GCA and it was horrible. I don't wish either of these on anyone and as much as we hate prednisone for all of its nasty side effects, we also remember that it saved him more than once and still is. Sometimes you do have to weigh the benefits with the risks and when the benefits outweigh the risk, you go with it regardless what the side effects are (especially when there appear to be no other options for PMR or GCA.)

I'm not an expert in anything. The thing I learned from the whole ordeal was how much I didn't know about medical disorders and medications. PMR is still an aberration among medical disorders when every research paper on the subject says more research is needed.

I didn't have any of the usual PMR related illnesses and I was never diagnosed with GCA. I was an aberration in that respect given I was diagnosed with PMR more than 15 years ago. Prior to PMR my diagnosis was a type of inflammatory arthritis called reactive arthritis. My very first dose of Prednisone was over 30 years ago for uveitis which was related to reactive arthritis.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
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I don't know how I wasn't ever diagnosed with GCA. I had uveitis that caused every kind of visual disturbance imaginable not too mention the possibility of going blind. I had flares of uveitis at least 50 times and needed at least 60 mg of Prednisone every time.

Whenever my inflammation levels were too high I had the mother of all headaches mostly around my left eye. Those electrical headaches were diagnosed as trigeminal neuralgia. It was a vascular problem combined with a nerve problem. The neurosurgeon said a large vein was traversing through my trigeminal nerve. He said the surgery was complicated and involved a branch of the petrosal vein. He said the vein couldn't be sacrificed for fear of me having a stroke. Separating the vein from my trigeminal nerve was impossible but he did the best he could. So far the microvascular decompression (MVD) surgery has stopped the trigeminal neuralgia pain.
https://radiopaedia.org/articles/superior-petrosal-vein-2?lang=us
I took a lot of Prednisone for trigeminal neuralgia in a futile attempt to quiet it down. Ultimately trigeminal neuralgia became refractory because the electrical headaches wouldn't stop for hours sometimes. My neurosurgeon said Prednisone was probably helping the inflammation and swelling in the area.
https://www.sciencedirect.com/science/article/abs/pii/S1878875022012918
I do know a fair amount about the adverse effects of Prednisone. I learned that from all the patients I cared for as a nurse. I knew very little about adrenal insufficiency until I stumbled upon the person who had an adrenal crisis. She was truly an expert in my opinion.

My rheumatologist has no plan to stop Actemra as long as it continues to work and Actemra keeps me off Prednisone.

@dadcue

Wow!!! You truly have been through it. Thanks for explaining all of this. I also don't know how you weren't diagnosed with GCA since the symptoms are so classic for it. Do you feel they misdiagnosed you?

I am just so sorry you had to go through all of this. My husband's doctor sounded like if it were needed, my husband could also remain on Actemra for the same reasons.

No ... I think my doctors got it right and I never believed I had GCA. My doctors always ask me about symptoms of GCA even now. I think they were very vigilant and certain that I didn't have GCA.

One time my rheumatologist refused to see me when I showed up at my appointment with a red eye and foggy vision. She asked me if I knew how serious it could be. She called the ophthalmology department herself and said I needed to go there first.

My ophthalmologist was the first person I told about electrical headaches around my eye. He said it wasn't an eye problem and referred me to a neurologist.

@dadcue

I’m glad to hear that. That must have been such a tough time. Those electrical headaches sound awful. My husband said the headaches he had were not like others he’d ever had.