New Biologic IL-6 blocker RoActemra (generic Tocilizumab)

harryhunt · 27. Aug 2013, 13:52

After four plus years on max MTX and HCQ with occasional steroids (although no serious side effects) I was gradually going downhill. I therefore gladly accepted the offer to go on a trial of the latest biological drug RoActemra which blocks the IL-6 protein which is heavily involved in inflammation. (MTX will be tapered in one of the groups.) After satisfying the criteria, 2 weeks ago had my 1st infusion at RD&E. Already starting to feel better and stopped pain killers. Swelling, pain and stiffness in joints are easing. Hard to believe it can act this quick. Looking forward to subsequent monthly infusions and hope I can see this through without infections or other complications. Now more hopeful of remission. Early days though.

maria09 · 28. Aug 2013, 05:38

Hi Harry
That's great news long may it continue
I'm still at the methotrexate and sulphasalazine stage got appointment with Rheumy nurse to see what's the nxt step is and how long before i go down the stronger meds line
Maria

kathbee · 28. Aug 2013, 11:41

Wow Harry
Thats music to my ears, I am awaiting my first Tocilizumab treatment after having failed DMARD's and 2 Anti-TNF's.
Hope you continue to feel this well,

Really good news.
Kath

harryhunt · 28. Aug 2013, 12:20

Thanks Kathbee and Maria and anyone else who is failing on their current meds. As I understand it this trial is still recruiting and as everything is paid for by Roche, including all meds, travel and food expenses, it's worth making enquiries to see if you meet the criteria. As I travel quite a distance to the centre I'll donate all mine to the hospital and hopefully give something back to the system.

harryhunt · 30. Aug 2013, 07:50

Got my blood tests today 2 weeks after 1st Tocilizumab (RoActemra) infusion. NEVER SEEN RESULTS LIKE THIS BEFORE
Even after steroids. CRP < 1 ESR 2. WOW! Where has the inflammation gone? What is the significance of this I wonder. White blood cell count is down but Doctor not concerned. Amazing! Have forwarded them to rheumatology and will soon learn more. Hope springs eternal.

stickywicket · 30. Aug 2013, 10:31

Good for you, HarryHunt. We do have, or have had others on here taking this med. I hope it works well for you.

harryhunt · 15. Nov 2013, 12:53

Well here I am after Tocilizumab infusion number 5. Still in remission with DAS < 1 CRP < 1 ESR 2. Two more to go and then MTX will be tapered for some of us but we won't know who, nor will the rheumatology team. I still get various muscle aches and pains occasionally but the heat and inflammation seem to be absent and I suspect this is down to doing too much too soon and may not be down to RA. After a couple of days I'm back to normal without the need for NSAIDS. Things are still looking good and no side effects yet. Hope this encourages a few of you for the future

dreamdaisy · 15. Nov 2013, 13:57

I have a similar positive result with humira (supported with injected meth). Within two weeks of beginning the humira (in June or July 2009) my CRP and ESR dropped from the mid-50s to figures between 1 and 5. Sometimes they are too small to measure. As to the actual physical benefit, well, that is far harder to measure because the OA has advanced and fibro has joined the party.

I think the sooner one starts meds the better the possible outcome can be. I went seven years without any meds (thanks to a lack of diagnosis) so for me it's always been too little and far too late. No matter, others are getting what they need sooner which has to be a good thing.

I wish you well for the future. DD