Should I try Actemra (Tocilizumab)

 I tried a Camera, and was able to get it down to not being very expensive co-pay. If you get it from a pharmacy that delivers directly to your house through Medicare and then if you have a second insurance I am in America and I have CIGNA for my supplemental day and my shots were not very expensive. The act Tamra it’s self I was not happy with. It did not seem to help my symptoms much and I had side effects but right now I can’t remember what they are. I’m thinking they were lots of itching in my hands and feet and lots of fatigue. There are many study That show at Tamara has been helpful. I would certainly give it a try, especially if you can work it out with your insurance to not have it be too costly.

I have a very similar problem with Humira. I have arthritis and my doctor wants to treat me with Humira but my copay is $850 per month. Obviously I can't afford that and my income is too high to qualify for help and if you're on Medicare they won't give you a discount card. So I'm totally screwed and to think I could be getting something that actually helps me not hurt so much but I can't get it. I'm only telling you this because I did try on GoodRx to see if I could get it cheaper without using my medicare. It was more expensive using GoodRx then my copay. You might try that and see if it would be cheaper than your co-pay.

Can your rheumatologist not get you onto the assistance programme where Genentech pay a lot of the cost? Or do Medicare patients not qualify? I don't know any more about it - maybe you could google it?

Thank you all for the quick responses. I don't know yet what my copay is going to be. My Rheumy will try to get me as good a deal as possible. I will likely not qualify for any special deals. I can afford the copay, but am naturally frugal with my retirement savings and even more hesitant to pay if I have the feeling that a significant part of the high prices is to frequently advertise for 5 min during prime time and to pay for lobbyists to convince US politicians that it is a good idea not to allow programs like Medicare to negotiate better prices.

koen1,

I was also diagnosed with GCA and PMR in summer of 2016. Like you I had trouble dropping the Prednisone dosage and would have to keep going up to 30 or 40 mg when a Flare would hit me hard. My Rheumy, who I think is very good, asked if I would like to try Actemra/Tocilizumab. I did have  some bad side effects from the Prednisone so I decided to try it.

I am now at 7mg of Prednisone and have not had any side effects (yet!) from the Actemra. I am almost at a year, June, of 162mg of Actemra twice a month and I have not had a major Flare.

For me I think the Actemra has helped and my Doctor did help get me some insurance help paying for it. Remember that Actemra is not a substitute for Prednisone but helps us get to a lower dose of Prednisone. I hope this helps with your decision.

I know this is not answering your specific question, but my first thought when I read your post was that your tapering had been really messed around, far too rapid, even the subsequent, slower, attempts seem to have been rather fast.  I wouldn't try a dsns "run" - I'd suggest a crawl.  But, that being said, if you can get Actemra at a price which won't bankrupt you it sounds like a plan!  Good luck!

Decided today that I am not ready to go with Actemra. In twenty months this was my third flare-up. First happened after dropping from 60mg to 25mg in 10 weeks at Rheumy's advice. 2nd was with partial DSNS method drop from 50mg to 17.5mg in 36 weeks and this last one was still to fast (apparently) dropping from 50 mg to 12.5 in 32 weeks. I hope by going slower down from 15mg this would not have been necessary.

Actemra scares me since I have several recurring infections, 4xUTI, chronic dermatitis and 5 styes in the past 20 months. Also the fact that I have no problem with Prednisone (so far) and I would still need Pred plus Actemra for the coming 18 months or so.

This is apart from the cost of Actemra, which we never got to discuss today.

My meeting with the rheumy assistant was very unpleasant, since she predicted that I would have no chance at success without the Actemra and we could always temporarily stop the Actemra if I were to have another infection. When I asked for a Pred prescription with a mixture of pill sizes including 2mg she gave it, told me I would have enough to do whatever I wanted and walked out the door without further instructions, a goodbye or anything. I supposed my meeting was over.

Wish me luck!

I really wish I would have gone down slower from the beginning. I am convinced I could have been under 10mg by now, which is going to be my target for my next attempt.

I started and quit Actemra due to side effects of itching and fatigue.  I also had flares going down on prednisone very slowly DSNS ... I’m at 8 yr. PMR person and while the prednisone generally controls the symptoms, I always have flares from time to time. It is discouraging, but My daily activity, is very high, so I continue with the predisone

Time to give you an update. I was not happy with the answers by my Reumy's PA about the combination of Actemra and my frequently recurring infections (styes and UTIs). I had a very good conversation with my Rheumatologist this week and I brought in this article published by NIH. He did not know it, but was openminded and agreed, that it is a very good and recent overview of best practices for the management of GCA. 

Here is the link: perhaps add to the Articles list?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5406009/

I hope it gets approved by the page guard.

Based on this we will try Methotrexate first. This has about 40% chance of success, which is not great. If it does not work, we can still go for the Actemra. We should know if this is successful in a couple of months. I will let you know.