Your help please - RoACTEMRA (tocilizumab) case studies required!

Your help please - RoACTEMRA (tocilizumab) case studies required!

I'm on the hunt for case study subjects for some media outreach around the end of this month (February).

Ideally (and I realize this might be a challenge to achieve so I'm utterly open to those outside the range) men and women between 30 to 50??

We need you to be currently managed on RoACTEMRA (tocilizumab), if possible having achieved remission.

Another valuable element is if you've had an elongated treatment journey before being put on RoACTEMRA.

Do please let me know if any of these apply to you - I'd be extremely grateful.

Thanking you so much for reading and considering my request.

11 Replies

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  • I currently fit this case study perfectly. I'm 37 years old, I am currently on Actemra for my RA. I've been on almost every drug available for RA since I was diagnosed 19 years ago. I have been on Actemra since September 2011. It has been working very well, so far, on my current RA symptoms. Although I have had success in the past with Kineret, my body grew a tolerence to the old meds after a few years.

  • KC Thanks so much for responding, I'd be delighted to be in touch on this. My email address is maimie@nras.org.uk if you'd like to contact me that way and we can move from there. Thanking you!

  • Hi Maimie,

    Me too. I am 37 and will be 38 this year. So far actemra is the only thing that's worked for me bar steroids. I have been on / still take methotrexate, sulfasalazine, prednisone, enbrel, humira and various other things. I started actemra in January 2011 sort of time and had 10 infusions. In fact it was so successful for me that I am currently off some of my meds and hoping to concieve.

    Sarah

  • Sarah,

    I'd love to hear from you on my email: maimie@nras.org.uk so that I can tell you a bit more about this. Thank you so much!

  • Sarah, Thank you very much too! Do by all means contact me by email so that I can send some more info to you if you're happy to be involved. My email is maimie@nras.org.uk. Much appreciated!

  • Alas, I'm 53 but have been on Actemra since it was approved by the U.S. Food and Drug Administration. My rheumy was involved in trials. Orencia was my favorite med but I became intolerant. Actemra is successful although the pain and disease progress....

  • Hello hello, thank you so much for getting in touch. At the moment it looks as though we have the case studies we need but if that should change I'd be happy to contact you again. If you're willing, do please send me word on my NRAS email: maimie@nras.org.uk - thanking you very much!

  • Hiya

    I have just seen your request for case studies of patients on Tociliazumab - sorry I can't spell it.

    I have been on it for almost 12 months and whilst I am not in remission I have been much better on it - my blood results are hugely better. In brief.......

    I am 28 years old but only 4 foot 5 inches tall and have had JIA since the age of 2. I am now wheelchair bound, have a break in my right hip which has never healed after a fall a few years ago. I had both hips and knees replaced as a teenager, spinal fusion to C1 and C2 and recently a hip revision and ankle fusion. I also have a stoma bag after my large bowel was removed due to infection. Also had MRSA and Meningitis as an adult.

    I have a long history of medical treatments, which include steroids being taken eery day since I was diagnosed of varying doses. I am now on 3mg each day and feel good, this is just a miracle for me and it coincides with the introduction of the Tociliazumab - I have never been this low on my steroids without flaring and going back up to 15mg plus each day.

    My condition is relatively controlled now, what I have now is the long term damage to bones, muscles etc so thats there for life, but the disease activity seems controlled. I also take Methotrexate oral - previously had major problems as a child on it. Also take Meloxicam, Lansoprasole, painkillers, calcium. Previously had so many different drugs, Cyclosporin, Enbrel (was really bad), Leflunomide, growth hormone, the list is huge.

    Let me know if I can help you or anybody else, cheers!

    David Lewis (email: lewis.david1983@yahoo.com)

  • Hiya

    I have just seen your request for case studies of patients on Tociliazumab - sorry I can't spell it.

    I have been on it for almost 12 months and whilst I am not in remission I have been much better on it - my blood results are hugely better. In brief.......

    I am 28 years old but only 4 foot 5 inches tall and have had JIA since the age of 2. I am now wheelchair bound, have a break in my right hip which has never healed after a fall a few years ago. I had both hips and knees replaced as a teenager, spinal fusion to C1 and C2 and recently a hip revision and ankle fusion. I also have a stoma bag after my large bowel was removed due to infection. Also had MRSA and Meningitis as an adult.

    I have a long history of medical treatments, which include steroids being taken eery day since I was diagnosed of varying doses. I am now on 3mg each day and feel good, this is just a miracle for me and it coincides with the introduction of the Tociliazumab - I have never been this low on my steroids without flaring and going back up to 15mg plus each day.

    My condition is relatively controlled now, what I have now is the long term damage to bones, muscles etc so thats there for life, but the disease activity seems controlled. I also take Methotrexate oral - previously had major problems as a child on it. Also take Meloxicam, Lansoprasole, painkillers, calcium. Previously had so many different drugs, Cyclosporin, Enbrel (was really bad), Leflunomide, growth hormone, the list is huge.

    Let me know if I can help you or anybody else, cheers!

    David Lewis (email: lewis.david1983@yahoo.com)

  • Hi there, just been offered this new drug as the Humira is no longer effective as I can't take the steroids any more as they are damaging my bones on the inside of them according tot he bone density tests! Humia was taken for 3.5 years but always with prednisolone and now I have stopped the Pred' the RA has very progressively worsened over the last month. Tried Sulphasalazine, Methatrexate and Lufludomine with adverse affects.

    I am female, 43 and it all started in pregnancy at 6 months gestation. My child is now nearly 10 years. They want me to start infusions asap as my RA is active presently and so I am waiting for my first appointment. I test positive for the Rheumatoid factor. Was fighting fit before hand and very active! Husband died when our child was 2 and since then it seemed to trigger the RA severely. If I can help, let me know.

  • Thank you for your interest but these case studies were required quite some time ago however we will keep your comments for any future requests. I do hope RoActemra is doing the trick for you and your RA is better controlled. If you are not already an NRAS members please consider joining us as this gives the society a much stronger voice in working on behalf of all those living with RA and we will be able to contact you with any future opportunitie.s

    Visit nras.org.uk or call 0845 458 3969 to join today.

    Clare (NRAS)

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