Flare

5400. Per month, ins. Has agreed to pay some on a monthly basis down to 2100. Per month.

It’s amazing how every PMR and GCA story seems so different. I couldn’t tolerate ACTEMRA. It actually worsened my condition to pretty intolerable. Maybe I was allergic?? But the prednisone has been a blessing and my quality of life is great. No pain and no bad side effects. At 4 mg I can do this for the rest of my life and be happy. Go figure!!

Doctor says not good to stay on prednisone. Many bad things happen

"At 4 mg I can do this for the rest of my life and be happy. Go figure!!"

Maybe 4 mg is the difference. I couldn't get anywhere near 4 mg for the first 10 years. I was still taking 10 mg when Actemra was started. My rheumatologist said if I only needed 3 mg he wouldn't have cared as much and would have never tried Actemra. I hate to say this, but he also said I was "too young" to take prednisone for the rest of my life.

I wasn't sure what age had to do with it. I didn't feel young and felt more like 100 instead of 65. Now I'm 70 and I feel like 70.

He might be right. I am 86 so it doesn’t matter that much that I stay on prednisone. I just had my bone density test done and it’s fine.

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I don't have that problem with Actemra infusions. Medicare pays for biologic infusions because they aren't considered to be "outpatient" medications. It is a shame that Medicare will pay for infusions and not injections just because injections are self administered.

Actemra has been around a relatively long time to treat RA and other things. If your doctor can do some"creative documentation" maybe he can sneak Actemra in for you. Saying something like "presumptive GCA" might work but the ethics of doing that is questionable. Actemra is FDA approved for GCA.

My rheumatologist had to get a waiver to get Actemra approved for me because I was only diagnosed with PMR. I didn't need a Medicare waiver but the waiver request was reviewed by a panel of doctors. A review board looked at my medical history and came back with an approval. The recommendation by the review board was that I should be treated "as if" I had GCA even though my rheumatologist didn't claim that I actually had GCA. My rheumatologist only claimed Actemra "should work" for PMR since the research done for GCA is fairly convincing.

After Actemra was approved, it wouldn't ever be unapproved as long as Actemra was working. I laughed, because I wouldn't want to take Actemra if it wasn't working well or had side effects. It isn't like Prednisone in the sense that it can't be stopped abruptly if necessary.

Kevzara is still patented so there won't be any generics anytime soon. Maybe the maker of Kevzara will come up with a formulation that can be infused but don't count on it. Actemra is no longer patented so there are already generics that are available.

I had a bone density scan that was read as "normal." My lumbar spine had a ridiculously high t-score of +5. The surgeon who ordered the bone scan said there was a lot of bone in the area of my lumbar spine but it probably wasn't "good bone." Apparently arthritis causes falsely high readings on Dexa scans.

The surgeon was going to remove much of the excess bone and fuse my lumbar spine. He wanted to evaluate whether or not I had enough "good bone structure" to hold all the hardware that would be needed to fuse my lumbar spine.

The surgeon was reluctant to proceed with surgery because I was taking prednisone and couldn't come off prednisone. Ironically, the pain was so severe I got desperate and took 60 mg of prednisone. The pain was relieved and surgery was postponed.

The surgeon insists that I still need a lumbar fusion. Actemra won't be an issue if I can skip my Actemra infusion during the month that I decide to do the surgery. I could probably skip a month but I don't have enough pain to do the surgery. I don't want to do the surgery anymore.

Did you have any wretched side effects with the Kevzara? I understand that the manufacturer will help cover the co-pay for Kevzara, unless your on a "government insurance plan"--i.e. Medicare. My Part D does not cover it. How do people affort it?

If Prednisone works for you ... I wouldn't tell you not to take prednisone. I try not to say Actemra will work for everyone because I know it won't be the best thing for everyone.

I was told NOT to try Actemra when it was first suggested to me by my rheumatologist. It was mostly a person who said she was "entitled" to know things about PMR and prednisone that nobody truly knows. She encouraged me to take more prednisone and routinely gave medical advice. She said prednisone was the best and only option for PMR. Her claim to fame was long term prednisone use and PMR for about the same period of time as me.

My rheumatologist countered her assertions by saying that I wouldn't know if Actemra works until I tried it to see and offered no guarantees that Actemra would work. I'm glad I tried Actemra to see if it works for me and I'm happy to have tapered off prednisone.

That was just my personal decision and currently how I feel. Prednisone is still an option in the future if Actemra stops working. I still have a prednisone prescription "as needed" that my rheumatologist wrote for me.

Good for you. The more I read these posts the more I realize everyone is different. I am glad I tried ACTEMRA and would do it again. You just have to because not to try a different option is plain silly. It didn’t work for me but at least I tried it and always had prednisone to fall back on.

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