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koen1 koen1

Should I try Actemra (Tocilizumab)

My rheumy is suggesting that I should try Actemra. Situation: PMR and GCA diagnosis in September 2016. Started at 60mg after some eye problems. Got down to 30mg in 8 weeks, flare-up at attempt to go to 25mg. Back to 60mg now slower, got down to 17.5 in 9 months. New flare-up, back up to 20, then 30 and then 50mg to get symptoms back under control. Then in 7 months DSNS method down to Now I have another flare-up and my rheumy suggests that I should try Actemra. I live in the US and am on Medicare, but it is going to be very expensive for me due to the copay. I have seen good double blind test reports, that suggest it is more effective than just prednisone.

I have no problems with the Pred: no weight gain, no high sugar, sleep well etc.

What do you think? Should I go for the Actemra or make sure the next DSNS "run" gets me below 10mg and then go even slower? 


26 Replies

  • Bethune koen1

     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.

  • amkoffee koen1

    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.

  • EileenH koen1

    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?

  • koen1

    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.

  • charles92035 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.

  • Anhaga koen1

    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!

    • koen1 Anhaga

      Hi Anhaga, I think you are right. I was doing fine until I tried to go from 15 to 12.5mg because I did not have smaller pills than 5mg. Also, every flare-up was after a period of very hard physical work. I just cannot seem to stop myself from doing more than I should take on. If I can get some support from insurance, I will try Actemra. 

  • koen1

    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.

    • Michdonn EileenH

      EileenH, I agree with you. I started on 20 mg, after my unmanaged I had to go to 30 mg to get relief and I am almost now at the dosage where flared a year ago. I now am a firm believer in slow and easy. And will continue at a snail's pace, but think positive with a smile. ☺️

    • EileenH koen1

      Over on the HealthUnlocked forum someone posted a link to a teaching video about GCA and there were some figures in it about relapses. The general consensus there amongst the members is that if they tried reducing at rather less breakneck speeds they just might find the relapse rate fell. The doctors of course claim it is to reduce the total dose of pred. OTOH - if you then have to go back to a higher dose because of a flare, often higher than the starting dose was, you have lost all that supposed benefit of lower doses. 

      Wonder how much they make out of a patient trying Actemra...

      Like Bethune, after 14 years I still have flares every few years but as time goes on I seem to need less to manage them. Either that or I get better at spotting them! And they are rarely associated with trying to reduce. Even during the flares I feel not too bad providing I get to use the dose of pred I need. 

  • Bethune koen1

    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

  • koen1

    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?

    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.


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