Drug named Tocilizumab or also Actemra

Has anyone had any experience with these drugs.? I have written several times before, and now have a new Rheumatologist in San Francisco who is wonderful She is from Ireland and has actually treated several people before with GCA . I have been on Prednisone for almost a year now, beginning at 80 mg. I have had 2 or 3 flare ups after reducing too quickly or too much at one time. In recent months I have been going very slowly. At 13 mg I had a flare up and went back up to 20 for a while. I have been on that for over a week and doing well, however my monthly blood tests are showing my CRP rating increasing each time I reduce, and also my blood platelets. The CRP is now 1.8 after rising to 1.6 the prior month. It was totally under control at high pred doses. My new rheumy just wrote me and said that there is a drug named,above, which she has used on 2 other patients with GCA here with great success. I have written her asking what exactly it does. It is given intravenously. It would be in addition to the pred I believe. She is concerned that each time we reduce the pred be it very slowly the measurements rise. Just wondering if anyone on this site have tried this drug. It is apparently not approved by the Federal Drug administration for this purpose, but that probably doesn't mean much considering how they administer.!

Thank you for all of your help.

6 Replies

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  • Yes...I had five infusions of the drug . It is meant for RA but is being tested as a steroid sparer. I had a very strange reaction after the fifth infusion. It was as though my insides were on fire. The only parallel I can think of is that someone had given me Clorox to drink. Needless to say. I stopped The infusions. It did bring my blood levels down and I was able to cope on a lower dose of prednisone. However I decided not to continue. That was a personal decision. I am 78 and my quality of life is important to me...it made me feel unwell. I live in LA and my daughter is in Palo Alto so if you would like to connect and talk ...I am ready and willing. I have had GCA since 2012 and Pnr for the past year . I will give you my number if you would like to call. My last doctor told me that GCA and PMR were the same disease ...just variations.

  • Hi, My name is Betty Snell from Atascadero, Ca. I've had GCA & PMR for the past year & a half. Dr. Put me on Preds to start, I had every side effect possible, he suggested Actemra so we could get me off preds STAT. It worked, I have labs done 1 week prior to my infusion, started this within 2 weeks of me being diognosed. I couldn't be happier, I had surgery so we had to skip my Infusion, just to be safe in case of infection, my sed rate started back up, till the next dose. Dr. Put me on a double dose & Not another set back. I truly believe You should give it a try, You can always stop & go back to preds. Just felt You should hear the other side. Feel free to contact Me. 805-610-5931. Or. medamom@webtv.net. GOOD LUCK.

  • Are you saying that on Actemra you don't need any Pred?

  • Saxjody, if you live near any of the test sites for this trial it might be worth seeing if you can be enrolled on the trial.

    I realise the evidence isn't there yet for GCA but Biologics have revolutionised the treatment of other types of vasculitis, connective tissue and RA, leaving patients steroid and symptom free. I don't think it's too much to hope that they do the same for GCA as well.

  • I take NO preds... If I were to show signs of GCA starting again, I would start 20mg & work down every 2 weeks.. I'm not saying Actemra is for everyone, but it's changed my life.

  • It is extremely common for flares of GCA in the first 18 months after diagnosis so you are not unusual and going back to a higher dose of pred shouldn't be a particular problem or of any great concern.

    There is no existing proof of the use of toxcilizumab allowing you to stop pred stat - and to do so would be very risky since the evidence isn't yet there that it will work without pred which we do know works. However, there is currently an international study using it alongside pred to see if it does allow reduction of pred more quickly - there is onfo about it somewhere on this forum.

    Here is a link:

    keepandshare.com/doc/633859...

    describing it in layman's language

    and here is a link for the study protocol itself

    hindawi.com/journals/ijr/20...

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