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Kevzara and Prednisone Tapering before and during Kevzara
Polymyalgia Rheumatica (PMR) | Last Active: 2 hours ago | Replies (135)Comment receiving replies
@dadcue Great questions. I am taking Tyenne (tocilizumab) , generic for Actemra, for PMR, and have not had symptoms of or been diagnosed with GCA. So yes, using tocilizumab off-label, though several studies support it's safety and effectiveness. And grateful that I'm on my third day off prednisone - so far so good.
I am posting as a patient, but I am an NP and a retired professor of nursing,- so I'm aware that the process of FDA approval is difficult, and doing the long-term randomized trials for efficacy and safety takes a lot of money, some federal grant funds through universities in the early stages, but most directly from pharmaceutical companies. My field is pediatrics, and many common medications used in children are not FDA approved, as they are so old and inexpensive (developed before FDA processes) that nobody wants to pay for the studies needed to approve them. Now that Tyenne is a cheaper alternative to Actemra, it's possible that neither company wants to pay for the studies that would approve tocilizumab for PMR.
Replies to "@dadcue Great questions. I am taking Tyenne (tocilizumab) , generic for Actemra, for PMR, and have..."
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@bubbiebirder
I'm just happy someone's research showed that IL-6 inhibitors work well for PMR/GCA. Actemra works really well for me and I have benefited immensely because my overall health has improved immensely. There is no comparison to how I felt on prednisone. Prednisone was NOT that bad but Actemra works much better for me. I'm somewhat worried about being on Actemra for 7 years but those years have been a lot better than my 12 years on prednisone.
I'm just a plain retired BSN with a statistics degree. I was in a world of my own at a University Hospital. I did a lot of bedside nursing which I preferred but I also did research. Several doctors wanted me to recruit patients, enroll them into research studies, collect the data and fill out all the paperwork before the age of computers.
A desktop computer was supplied by a pharmaceutical company which cost thousands of dollars at the time. A doctor wanted me to create a database because he didn't know what the computer could do. I was allowed to use the computer however I wanted while the doctor spent all of his time in the lab. The hospital had their mainframe computers but the desktop computer wasn't linked to anything.
The patient research studies were local and also multi-centered, double blinded randomized controlled studies. I was privy to the patient records that were enrolled in our research studies. Many of the nationwide studies were suddenly discontinued. I thought research studies were "relatively safe" and much was already known. That wasn't always true. A lot of money was spent on "failed research" when something didn't work. Billions of dollars can be lost. People only know about the windfall profits when something works and they think nobody should profit from healthcare. I'm somewhere in the middle but there are two sides to everything.