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How hard is it to get on Actemra (Tocilizumab) with PMR?
Has anyone had experience with getting their doctors to prescribe, AND their insurance to pay for, Actemra (Tocilizumab) when they "only" have PMR?
Some background: It seems I have PMR or Giant Cell Arteritis (GCA) or both. It started on Jan 14, 2023. A PET scan soon should help clarify the situation. My "presentation" is extraordinarily severe, and I'm currently on 60 mg of prednisone.
In either case, based on the studies I've seen, Actemra (Tocilizumab) helps in tapering off prednisone. This is both in terms of reducing the risk of relapse and adverse events.
However, I understand Actemra is only approved by the FDA for Giant Cell Arteritis. And I read Actemra is quite expensive.
It may turn out I "only" have PMR. In that case, officially to get Actemra , it would have to be an "off-label" prescription. Has anyone had experience with getting their doctors to prescribe, AND their insurance to pay for, Actemra when they "only" have PMR?
My medical provider is the HMO Kaiser Permanente...
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You might want to remind your doctor about the risk of a bowel perforation while on Actemra if you have ever had diverticulitis. I think bowel irritation is a common problem when people take prednisone. When they switch to Actemra, something happens to increase the risk of a perforated bowel.
I haven't had that problem ... thank God. I knew someone who did have a bowel perforation who ended up having an adrenal crisis. She wasn't taking Actemra so she said it was prednisone that caused the bowel perforation. Secondary adrenal insufficiency was definitely caused by her long term prednisone use. It was hard to blame anything else for the adrenal crisis.
When you taper down to 7 mg of prednisone or in that range +/- that is when the symptoms of adrenal insufficiency start to show up. People really seem to struggle at that dose of prednisone when they try to taper off. Adrenal insufficiency makes it very difficult to go much lower than 7 mg unless you taper extremely slow. That is why we are told to taper off prednisone slowly in the first place. The adrenal problem gets worse the longer we take prednisone.
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1 ReactionVery good to know! Thanks for the wisdom @dadcue! ❤️
That is so very interesting. You just described my sweating episodes I dealt with for more than four years. It was so embarrassing! I would even break out in a sweat waiting in the grocery store line. Like you I went on a hiking tour in Oregon and was drenched even though it was December and very cool out. Yes, definitely the prednisone. Thanks for understanding and reinforcing I need an adrenal check.
"Breaking out is a cold sweat" is a real thing!
https://www.sweatblock.com/cold-sweats-causes/#:~:text=While%20normal%20sweating%20is%20part,of%20more%20serious%20health%20issues.
Yes, I think prednisone had something to do with it.
If I used the shots it would be $4k a dose. Who can afford that?? Not me! When my RA came back active my rheumy, who was beside herself at the level of pred I have to be on to function, decided we should try infusions of Actemra. I checked the cost and you'd hernI eo I ld do it but not if the plan was to start with infusions then switch to shots. I think the cost is crazy! Especially since this is a condition that affects older people...a lot whose incomes have been reduced. She said no.just infusions. I hope so. We got delayed because of some infections that are almost done. Hopefully I will hear soon. But.I wish something could be done about the costs.....insane even with their help.
Hello my friend!
Medicare will pay for infusions of Actemra because they are given in a "hospital setting" like an infusion suite. Infusions are done by hospital personnel as compared to injections that are self administered at home and done on an outpatient basis.
Unfortunately, Medicare will only pay for 80% of the cost of the infusions. The remaining 20% is still a lot of money. With your RA diagnosis, Actemra is FDA approved so you won't need any other approval.
Do you have a Medicare supplemental plan? That should cover the remaining 20%. I'm not sure how the Medicare Advantage plans work. Legally, I think those types of plans are required to cover medications that are FDA approved for the diagnosis being treated. But again, the Advantage plans will only pay for the infusions.
I was worried about you when you said you had a long history of RA. All I can say is things get complicated when you have other autoimmune disorders along with PMR.
Yes I have supplemental or I probably would not be able to do this. I have a drug plan as well...so with the drug plan the shots would be $4k for my co-pay. Insane....and that is nothing compared to the other drug. I just wonder if they think people can pay? Obviously they do but what about those who can not? Give them some for free...they feel better and then it's gone? Anyway...my soapbox is showing.
How are you??? I hope we'll.
Yes I think that's why I require all this pred and still.have problems when most don't. I have several autoimmune things going on so not just the RA. My fibromyalgia flares a lot since I developed PMR. And the pred is messing with my muscles.which is messing with my OA. But I think overall it's got the PMR stuck and not responding enough to the pred. Oy. Lol.
Chronic systemic inflammation messes with a lot of things. Treatment with prednisone messes with more things. You wind up with a huge mess on your hands!
I don't think prednisone mops up the mess. Prednisone makes the mess bigger in my opinion. That is how I see it anyway.