Question, what is….,

[DONNA1949]

What is TCZ?

[DorsetLady PMRGCAuk volunteer]

Tocilizmab - see link -

versusarthritis.org/about-a...

Also used for Covid patients - Why do you ask?

[baxternoni]

In the US doctors use Actemra. Works for GCA & RA.

[HeronNS in reply to baxternoni]

Actemra is the brand name of tocilizumab.

[baxternoni in reply to HeronNS]

I meant to say that they use the name Actemra, maybe because it is easier for all to pronounce.

[HeronNS in reply to baxternoni]

Ah, okay! I did wonder.

[baxternoni in reply to HeronNS]

I do know that, but it is hard to pronounce tocilizumab.

[HeronNS in reply to baxternoni]

I just read your story. Why do you think you will be on Actemra indefinitely?

[baxternoni in reply to HeronNS]

Because I also got diagnosed with LVV. Prednisone is not used long term by at least my rheumatologist. Most of his patients are already off Actemra. When I first got diagnosed with GCA he told us that I would probably be on it around two years., but I got the LVV a couple of months ago and he said that I would be on it indefinitely. I have very complicated medical issues. That is also is a reason I am not vaccinated. We pretty much stay at home. My doctors don’t want me out.

[HeronNS in reply to baxternoni]

|That is very interesting. So sorry you have these issues to deal with. Let's hope the pandemic fizzles out eventually so we can all, especially people like youself, feel happier being out and about.

[baxternoni]

My Rheumatologist is one of the top doctors for AS. He does all the drug studies. After seeing so many rheumatologists I found out about a support group in Houston. This is where I met him (he was giving a talk). I had not seen a rheumatologist for so many years because they never helped me with all my pain. When he heard this he said that was bad. He was unable to see me as a patient due to University patient ratio or something, however six months later I was able to become his patient. He started me on a Biologic and after the first infusion, what a difference. After my second one we drove to Colorado and I had no pain. Unfortunately I developed an allergic reaction to the drug. The one that worked for me was Humira. I took it for nine years. My SI joints are fused but luckily not my spine. My brother also has AS. Dr. Reveille enrolled my family in a family (genetic) study at UT. We know we got it from my mom. Her brother had severe AS. My brother and I suffered from uveitis at the same time years ago. My brother’s AS was never as bad as mine. My AS has been pretty stable since I heart surgery for some reason. My doctor said that Actemra doesn’t work for AS. Sorry for the long story.

[baxternoni]

I hear you. Hopefully there be no short of supplies.

[baxternoni]

I had my first uveitis was 10 years before I was diagnosed with AS. I saw the ophthalmologist every morning before I went to work. I went around with a dilated pupil for one month. With green eyes I looked odd. I got AS diagnosed two months before I got married.

I found a Duke educated doctor who switched to Eastern medicine when she saw her patients not getting better. She went to China and learned their medicine. She helped me tremendously with acupuncture, cupping…. she was great. Unfortunately she passed away and that was when I found my rheumatologist. He travels around the world and meets with AS doctors to discuss different studies being conducted. He is in Brussels this week.