Actemra (Tocilizumab) - fantastic results in the first month
Posted , 18 users are following.
I started self-injecting Actemra 4 weeks ago. My PMR was still very active despite 10mg of pred and 20mg MTX.
My CRP was sitting at 20 and not budging (yes, I know it's not awful, but it's not wonderful either lol).
Three weeks after starting the Actemra injections, my CRP is ONE!!
Yep - ONE!!! It hasn't been below 16 since diagnosis!
And I'm feeling well!!! I've even managed to get through my daughter's drama filled wedding and not fall in a big heap!
To say I'm impressed would be an understatement!
For more information you can try Googling "tocilizumab" and "remission" to get some quite readable articles on the early trials of using Actemra to treat PMR.
1 like, 74 replies
JanSP FlipDover_Aust
Posted
Here in the USA I am able to get my Actemra through the Genentech Foundation for free with the help of my rheumy. Normally it cost $17,000 per year for my every other week self injectable syringes. A few weeks ago the dose was doubled to a shot a week. Does that mean it would cost $34.000 if I had to pay for it? Yikes! It's not a trial and it's for my GCA. Genentech is aware I use it for GCA and not RA. I believe a patient can earn up to $150,000 US before they are disqualified. I do have Medicare and an AARP Suppliment but they don't cover this becuse it's off label use. I hope this helps someone else get it without cost. I don't know if it's helping me since all but one of my flares happened after I'd been off pred for awhile. Jan
alward JanSP
Posted
Jan- I am very interested in how you got this through Genetech Fndn. My dad is approved through his insturance but has to pay about $700 per month. If you'd rather talk directly, please contact me. I'd be so very grateful.
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kathy67492 JanSP
Posted
Anhaga kathy67492
Posted
You can always private message each other if you don't want to share personal info too widely. Click on the envelope under person's name.
JanSP kathy67492
Posted
I live in Edgewater, Florida. Genentech sends the Actemra in a chilled box right to my door. They arrange a day to make sure someone will be here to accept it and get it refrigerated. Any other questions? Jan
JanSP alward
Posted
You can get to the Genentech Foundation on the internet or call Genentech. Find the contact number on the internet. My husband wrote to them and filled out a form as well as making many phone calls to them. Our rheumy also filled out info. She was familiar with the process. Good luck. Jan
kathy67492 JanSP
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Yes. I see my rheumatologist back in Colorado in December...but then I am returning to the Bahamas for the winter on December 29. Idon't know that I will be able to do the paperwork, phone calling, etc. in such a small window. Also, there is the question of keeping the medicine refrigerated and transporting it...bringing it into the Bahamas...mmm We do make a short trip home again in March...maybe that will work....but still the question of transporting the medicine. Thank you for all the info😊
Anhaga kathy67492
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FlipDover_Aust JanSP
Posted
The price sounds about right. But I'm curious about your dose now - I have 1.62ml weekly by self injection.
What dose are you on now?
kathy67492 Anhaga
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JanSP FlipDover_Aust
Posted
Flip,
My Actemra dose is the same. I also inject .8 ml MTX but on a different day of the week. I inject them into a pinch of skin and belly fat. I have plenty of that now. I lost 15 lbs. Only have 45 lbs to go. A nurse friend suggested I chill the area with an ice cube before I stick the needle in. It definitely makes it more comfortable. The doctor's assistant suggested I let the Actemra sit out of the fridge a little before injecting for less pain. I hardly feel it going in. Jan
Anhaga kathy67492
Posted
Ah, I see. And I guess it's not really possible for a local pharmacy to import anything for you either.
FlipDover_Aust JanSP
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I have plenty of belly fat too!
I don't feel it, but I was given the advice about leaving it out of the frigde for 30 minutes right from the start. Never feel a thing. I almost look forward to it, knowing what a difference it's made!
FlipDover_Aust JanSP
Posted
I'm even luckier - Mine gets delievered to my local chemist and I pick it up at my lesiure!
alward FlipDover_Aust
Posted
My dad's dr says he has to have it done at the dr office via infusion. Is that how you have to start out? And then you can move to doing it at home?
FlipDover_Aust alward
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There are two ways of getting it - one is by infusion, the other by injection. A woman I work with, who actually has RA, has infusions once a month. I believe, but could be wrong, that the injection is rather new, which is why the infusion might still be offered. My rhuemy told me I am his first patient with PMR to use it and the first to self inject. I imagine he's probably going to be pretty excited to see me next week given the impressive results I've had to date!
JanSP alward
Posted
Genentech gave me the option of injection or infusion. My rheumy doesn't do infusions so injections were the answer.
alward FlipDover_Aust
Posted