Kevzara and Prednisone Tapering before and during Kevzara

@dadcue how about methotrexate my doc is suggesting that but there are again a lot of side affects.

@dadcue
I had not seen the bathtub theory.
I have a pretty good grip on what IL-6 inhibitors do. And sort-of how.
Along with Kevzara (saralumab), I increased (and/or added) my intake of natural IL-6 “regulators” in my diet.

Foods that regulate (suppress) Interleukin-6 (IL-6), a major driver of inflammation, are rich in omega-3 fatty acids, antioxidants, and polyphenols.

IL-6 Suppressing Foods?
Fish: Salmon, sardines, and mackerel (high in omega-3s). Berries & Cherries: Blueberries, strawberries, and tart cherries.
(add Rosemary to Blueberries to enhance their value)
Cruciferous Vegetables: Broccoli and kale.
Oils: Extra virgin olive oil.
Spices: Turmeric and ginger.
(add black pepper to Turmeric to enhance absorption of Curcurmin)
Nuts: Walnuts and almonds.
Beverages: Green tea.

Foods to Avoid?
(IL-6 Triggers)
To keep IL-6 levels low, limit pro-inflammatory foods such as added sugars, refined grains (white bread, pasta), trans fats, and processed/red meats.

Because I now have to take a blood thinner because of Prednisone, I had to stop Green Tea, Turmeric and Ginger. And, because Prednisone triggers herpes outbreaks, I have to limit my intake of walnuts and almonds; but with the daily addition of the drug Valacyclovir (which acts as a prophylactic) I can eat a few.

@tapamil65

That is the great thing that is currently changing about how PMR and GCA are treated. The days when Prednisone was considered to be the "only option" are over.

I took methotrexate (MTX) a long time ago. I was on MTX for more than a year. I was glad I took MTX even though it was eventually stopped because of GI symptoms and elevated liver enzymes. I thought it was worth it to see if MTX would work or not. MTX wasn't a complete failure. MTX helped me decrease my prednisone dose but it didn't allow me to get off Prednisone.

That's a big problem with trying something different. The patient expects some kind of guarantee the treatment works but the doctor can't provide any guarantee. You basically have to try it to see if you like how MTX works for you. Some people like how it works and some people don't. My experience with MTX was mixed. I liked some of the things about MTX but other things were not so good.

I was very happy that I tried MTX when my rheumatologist wanted approval to use Actemra. He specifically wrote that "all options were tried most notably MTX" but I was still unable to taper off prednisone. I got the impression that MTX had to be tried first before Actemra would be approved.

There is now a growing list of medications that can be used to treat PMR/GCA . Having other options besides Prednisone is a good thing!

@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.

@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.