Anyone tried Actemra (Tocilizumab) to treat PMR? FDA approved for GCA

Thanks for sharing. I'm so glad you finally got if Prednisone. I hope I'll get there one day🤞

Krueg, since you’re taking a biologic that has risks you might look into Kevzara which is also a biologic that has risks. The difference being that it is approved specifically for PMR. I stopped Kevzara when I developed some health issues, I can get by on 5 mg of Pred so I decided to just stay on that because I’m afraid of cancer risk of biologic’s.

I think ACTEMRA and kevzara are similar in risks so in think i would be just switching to the same thing. I just don't like the risks but rheumatologist is just so into actemra and thinks Prednisone is worse, which it is terrible and has alot of side effects which are bad. I feel like the choices we have are really like not having any choice... all the medications are not good

Yes, my rheumatologist said Pred is acceptable if kept to 5ml/day or less for long term, any higher dose is not good. I wish you the best in your search for relief.

I am so sorry that you are having so many problems. My thoughts and prayers are with you. But don't give up hope.

I haven't had experience with taking Actemra, and was turned away by Mayo Clinic because I live out of state (if they take you on and appointments are far out, ask about televisits, they may be sooner). This month I have an appointment with Penn Medicine in Philadelphia which is a lot closer to my home (still 2 hours away but worth the drive).

My PMR symptoms started four months after I recouped from Covid (if you want to call it that; I have never been a 100% since) that I caught in February of 2020 when it first came out. I was sick for months but refused to go to the hospital (people were going in and not coming out). Suffered for 3+ years with severe pain, had multiple testing, and finally was diagnosed in August, 2023 with PMR. As of now, I still only have PMR, but I feel like it is, for the most part, under better control.

LIFE CHANGING moment was when I discovered that MOVEMENT caused my symptoms of my PMR to reduce dramatically in the morning and a lot faster (pain, stiffness, fatigue, nausea, etc.). I found meds did not give me the same level of relief, but they did help. Although I am waiting to be put on Kevzara within the next several months, I decided that I would make a lifestyle change. I eat clean and walk everyday through rain, sleet, snow, etc. (like the mailman, but within reason). In order to help keep my anxiety at bay, I do at least one thing a day that I enjoy that brings me happiness (even if it is just one small thing). Yes, I have "recess" as an adult (remember when you were in elementary school and you use to have recess after lunch that you look forward to, well that's what I have now for me), AKA "me time" but it can also include other people, your pets, etc. The night before, I usually make myself a short list of things I "have to get done" for the next day, so that is already figured into my next days schedule. REMEMBER, you don't have to start out big, I didn't. I had very little energy and would only last 10 to 15 minutes and then had to take a nap because of the fatigue and being really out of breath. I had to work up to where I am now over months and months period of time. Just do what you can, and soon you will be able to do more and more. All you need to do is think of that one fun thing you would like to do that would make you really happy (like a reward; I know it sounds silly but it'll make you feel good!). For Example: Last night I decided that today I need to process all medical claims for my dogs, pay my bills, help my daughter straighten up her room, take care of my husband that is Covid positive since Monday (he is in quarantine), etc. The one fun thing I decided to do today: Bake cookies for New Years with my daughter, even if it is only one batch right now. If I can do more, it's a bonus! I have a new recipe for eggnog cookies that look amazing; I love baking and spending time with my kids, so this is a win, win for me!

It is too easy to mentally feel lousy when you physically feel lousy; they both seem to go hand in hand. However, even if you can't get much done in a day, make sure you make the time for that one important thing for yourself that makes you happy or makes you laugh. I have found that this is the best medicine.

Thanks you for your response and encouragement. My anxiety level is off the charts since I've had this crap. My mind never shuts off it's really exhausting. I too find exercise is extremely helpful. I walk 2 miles almost everyday and started yoga about s year ago and absolutely love it. Never too old to try something new as the saying goes. Thanks again and i wish you luck in your journey to remission

I'm not sure how many people are interested or how many people who have GCA are currently being treated with Actemra (tocilizumab). A biosimilar will help to reduce the cost of Actemra. A biosimilar is like a generic version of the more expensive brand name medication. When the patent on a medication expires, lower cost competitors are allowed to enter the market.

Actemra enabled me to taper off prednisone after being on prednisone for 12 years for refractory PMR. Actemra is FDA approved for GCA but it also helped me. I had an excellent response to Actemra. I feel like my health and well being have both improved but not everyone will have as good of a response. Actemra was a huge step in the right direction for me compared to long term prednisone.

Kevzara is FDA approved for PMR and shares the same classification as Actemra ... both are IL-6 inhibitors. Kevzara was FDA approved for PMR a year ago. I think the patent on Kevzara will expire sometime after 2030.

But for biologics - a Series of them in my case - my quality of life would be nil. I don’t know how you have managed either to take Prednisone for 12 years - or to taper to zero. I really don’t. Prednisone was a recent miracle for me - and for that reason I pray I never need it again. But I’m thrilled you have found your equivalent to my Remicade.

I'm in awe with biologics in general. I remember being on a forum for people with spondyloarthritis. After PMR was diagnosed, my medical problems included a "history of reactive arthritis" as if it wasn't a factor anymore. My primary diagnosis was PMR and I was treated appropriately or not with prednisone.

People on the spondyloarthritis forum were all on Remicade or another TNF inhibitor and they weren't impressed that my treatment was prednisone. I was being told that prednisone was the "only option" for PMR.

I have come to the conclusion that a diagnosis of PMR, spondyloarthritis, RA or any of the many autoimmune disorders dictates what treatment you receive. Targeting the inflammation pathway rather than a diagnosis makes more sense to me. A diagnosis is often wrong. Even when it is correct, there might be other treatment options to prednisone if someone is willing to try them. The problem with prednisone --- the longer prednisone is used, the more difficult it becomes to taper off. As long as prednisone is considered to be the "only option" things aren't likely to improve very quickly.

Historically, people with RA paved the way for biologic treatments for other autoimmune disorders. PMR/GCA were autoimmune disorders that were left behind as far as treatment options are concerned.

Yea - the population with RA is akin to Baby Boomers. The autoimmune universe is not a normal distribution and as far as I’m aware, we are the biggest group by far. So we are going to get the research money and the new drugs. It is a side benefit that people with other autoimmune diseases frequently can get benefit from one or more of the same drugs. But too many seem relegated to the corners of treatment options.