Is progress being made in understanding PMR/GCA?

"Trust me, as a nurse of 40+ years, it was not blepharitis. Now both eyes are sore and painful."

Are your eyes sensitive to light? Do you see floaters? Is your vision getting foggy?

I had uveitis. My symptoms progressed rapidly in a matter of a day or two until I couldn't see with one eye. Uveitis can affect both eyes at once. My uveitis had an acute onset but there is a chronic type of uveitis. too.
https://www.ncbi.nlm.nih.gov/books/NBK540993/#:~:text=Uveitis%20is%20a%20disease%20process,pain%20to%20complete%20vision%20loss.
------------------------
Uveitis is associated with inflammatory arthritis more than PMR. I think uveitis can happen with any inflammatory disorder when our immune system becomes deranged. You can also have more than one inflammatory disorder.

No floaters but my vision has been blurry and eyes horribly filled with blood like pinkeye only worse since the morning after my second Pfizer shot. Over two years now and they got worse after PMR and Prednisone. Now it's all I can do to work on the computer because I can't bring the words into focus. I've been a brave little soldier up until now but between the vision problems and the pain and debilitating effects of trying to taper off Prednisone, I'm pretty bummed.

My uveitis had an autoimmune origin. I knew almost immediately when it flared up so I would call my ophthalmologist who would see me quickly. I asked my ophthalmologist whether or not I should just take Prednisone whenever my symptoms started. My ophthalmologist said never take Prednisone without me seeing him first. He said with uveitis there could be an underlying infectious process going on and Prednisone could make it worse.

My uveitis was "aggressive" and my vision deteriorated quickly. It was also painful and very red from inflammation. It was hard for me not to notice when it flared. However, my ophthalmologist said uveitis can be chronic and the inflammation can simmer for a long time before a person begins to notice. He said the chronic type of inflammation can do damage as much as my acute flares of uveitis.

I would never say that I knew it was a flare of uveitis. I would say "I might be having a flare of uveitis." That was enough to warrant an urgent eye exam. Supposedly you have to be seen to know if you have uveitis or not. Someone would need to diagnose it and decide what caused it. Like many things in medicine ... it can be idiopathic.

@hopeinal That sounds miserable. I was always advised by my rheumatologists to go back up to the last Prednisone dose that kept me pain free if I had a flare while tapering. I tapered down from 60 mg/day to 0 mg/day over a period of 6 months, but was given plenty of leeway to alter the schedule and dosage as needed, based on the pain I was experiencing.

Did anyone ever tell you that your taper was too fast?

Actemra made a mockery of slow Prednisone tapers. You were lucky not to be on Prednisone very long. Did you ever feel any symptoms that you would attribute to adrenal insufficiency?

My adrenals must have been resilient considering I took Prednisone for 12 years. My cortisol level was low once I reached 3 mg of Prednisone. I had to stay on 3 mg for 6 months waiting for my cortisol level to improve.

Once my cortisol level was adequate, my endocrinologist said there was no need to taper. From 3 mg, my endocrinologist said I could discontinue Prednisone but I should take Prednisone again if I "felt the need." I was worried about an adrenal crisis but that didn't happen. By that time, I was confident Actemra had PMR under control.

I was just annoyed that Actemra wasn't tried a lot sooner. My quality of life on Prednisone for 12 years wasn't very good.

Hi @dadcue! You asked "Did anyone ever tell you that your taper was too fast?" The answer is yes. There is another website out of the UK, and when I posted the six month tapering schedule my rheumatologist had recommended, the self-proclaimed experts there were extremely skeptical to the point of rudely ridiculing my posting. They believed the schedule was ridiculously fast.

Yet, I trusted my rheumatologist, and it turned out that I was able to taper over 6 months with no flares. If I had flares, my rheumatologist recommended stepping back to the last level of Prednisone dosage before the flares occurred. But that never happened.

You also asked "Did you ever feel any symptoms that you would attribute to adrenal insufficiency?"

The only thing I noticed about my adrenals was that after my initial Prednisone dosage was started at 20 mg/day shortly after my diagnosis, my adrenal glands then slowly stopped making cortisol over a period of several weeks. Unfortunately, at that point, the 20 mg dosage of Prednisone was inadequate to alleviate my inflammation. I ended up having to go to the ER due to an extreme inflammation event - specifically double vision due to swelling in the structures behind my eyes. The ER doctors then raised my Prednisone dosage to 60 mg/day. That was enough to finally stop my inflammation. This was over 6 weeks after my initial PMR/GCA attack, and there was a lot of pain until this happened. However, 60 mg/day of Prednisone had some serious side effects, so I was very happy to have Actemra introduced about a month later and to start tapering off Prednisone.

I know the website you are referring to. I liked the forum itself with people who were sharing their experiences. Everyone seemed to say the "experts" would be able to answer any questions I had.

There were just a couple of people who claimed to be "entitled to know" things about PMR/GCA when everything I was reading said more research was needed. I pointed out some things and "respectfully disagreed" what one of the experts said. The retort was that I was being disrespectful for disagreeing with them. I was mostly reporting what my personal experience was when I started Actemra more than 5 years ago. The experts weren't very supportive and were critical of my rheumatoolgist.

I wanted to get information about Actemra back in 2019 when I didn't know anything about it. There wasn't much experience with Actemra for PMR in the UK but there were some people elsewhere in Europe who were being treated with Actemra I tried to ignore the experts and tried to communicate with people who had some experience with Actemra. The experts would interrupt the thread with their opinions. I haven't been on that forum for a long time. I ended up being banned. My experience with Actemra wasn't pertinent was what I was told. I think it just disrupted the narrative of the experts.

Hi.... I would like to get your insight on Actemra. I was diagnosed with GCA in October, 2023... Started with 60mg Prednisone and after 7 months started weekly Actemra injections (while still on 10mg Prednisone ). I am off Prednisone since end of July and haven't had any relapse. Have you heard anything about tapering off or discontinuing Actemra ?
Thanks and take good care of yourself.

No real insight except to say Actemra works well for me. I'm glad you were able to get off Prednisone relatively quickly.

I have been off Prednisone for close to 4 years but I still do a monthly infusion of Actemra. I started out doing the injections and they worked well too.

Actemra can be stopped easily so there is no need to taper off like we have to with Prednisone. Actemra doesn't suppress the adrenals which is the primary reason for doing slow tapers when stopping Prednisone. If you feel well being off Prednisone then it isn't likely you have adrenal insufficiency.

Some doctors stretch out the interval between injections as a way to see if a relapse might occur without stopping Actemra completely. Many people do have a "sustained remission" after stopping Actemra but there is always the possibility of a relapse.

I didn't have an abrupt relapse when I went 7 weeks between Actemra infusions. However, my inflammation markers crept up so my rheumatologist said I better stay on an infusion every month.

I personally haven't had any adverse effects from Actemra in 5 years. Side effects are possible but my rheumatologist thinks it is better to be on Actemra compared to "long term" or lifetime treatment with Prednisone. My quality of life is much better since I stopped taking Prednisone. I was able to stop about 6 other medications that were treating Prednisone side effects.

I know people in some countries are restricted to 1 year of Actemra for the treatment of GCA regardless of whether Actemra works for them or not. We don't have that restriction to worry about in the United States.

Thanks for the response. Do you know which markers are being used to monitor inflammation?... Based on what I read about Actemra the usual ESR and CRP bio markers are not reliable readings as Actemra inhibits IL-6 receptors. Is your rheumatologist using a different set of bio markers to monitor progress?... I am starting this process and any feedback is appreciated.