I read some remarks on this forum about this medication. I hope this link to the study report is not banned but this medication seemed to greatly shorten PMR , reduce steroid use and no relapses. The medication need further study and is reserved for patients who cannot tolerate steroids- broken bone osteoporosis and the very frail. The drug is currently used for RA.
This is just a very small pilot study - there is currently a large phase III clinical trial ongoing for the use of TCZ in GCA, on the basis of similar sized pilot studies in the past. However - it is not yet approved by the FDA (in the USA) or any other regulatory body in the world for use in GCA or PMR. That means it will not be financed by the fundholders - generally the state in Europe or insurance companies in the US. Any use of it at present in either GCA or PMR will be off-label. There is one lady on the forums who is on it, the funding has come from the pharmaceutical company. The annual cost is somewhere IRO $17,000 as it is still under patent protection and it isn't clear for how long it will be needed, the studies are not yet long enough to know whether it induces permanent or even long-lasting remission. It is likely to become cheaper as of 2020.
Despite there having been similar results in GCA, the NHS has just published a public consultation document where they make it quite clear the intention is for it NOT to be approved for GCA except in very exceptional circumstances. They are, however, recommending approval for it to be used in Takayashu's disease. What is the difference you may ask?
Takayashu's is an extremely rare disease that is, to all intents and purposes, the same as GCA except it occurs mainly in young women and is a major cause of morbidity and mortality. There are probably a few dozen cases a year in the UK (or less) compared to perhaps 2 or 3 thousand cases of GCA. And it is a different age group altogether. Ageism? Or purely financial considerations?
It is also associated with some very hefty side effects - some of which make pred look quite a pussy cat! Whether the very frail could tolerate it is another questions.
So sorry folks - don't get too excited just yet! It isn't going to be on the menu in the UK just yet and I doubt it will get blanket funding approval in the US even if the FDA were to approve it - and they haven't yet.
Eileen, I will try to follow up on this. That hospital is where I had scoliosis surgery as a child and then as an adult. They are a world class center for rheumatological diseases and get patients from around the world.
Hi!
I'm the person who is on tocilizumab, called Actemra from Genentech here in the US. My rheumy at Mayo Clinic in Jacksonville, FL thinks it's my best bet for lowering my pred. I've had GCA since June 2009. It started 3 days after an infusion of Reclast for my bones. My mom died of complications from lupus and had two other autoimmunes.I had broken a hip when I was 57 (I'm now 70) and with GERD my docs thought Fosamex was too harsh for my esophagus. I took 2 years of Forteo injections which worked well but is only FDA approved for 2 years. It was especially important to keep my bones strong since I've had a scoliosis discovered when I was 12 yrs. I never had surgery - just pain. I was 5' 4" but the doc says if my spine was straight I would be 5" 7". Now I'm 5' 1 1/2". I've put on 58 lbs and between the belly and the scoliosis taking up lung space it's hard to catch my breathe even walking. It's kind of ironic that I took the Reclast to strenghten my bones and now the pred is weakening them. I also had PMR and one flare of that, four GCA flares, possibly primary biliary cirrhosis and something that attacked the electrical functioning of my heart needing a pacemaker. I can't believe how active and athletic I used to be. As far as the Actemra goes I've taken 5 injections so far, one every other week and no side effects. I have a long list of pred side effects. I was just reduced to 20 mg of pred (slowly down from 80 mg - 60 didn't handle this last flare) yesterday and I'm also on .8ml methorexate. Fortunately the Genentech Foundation is covering the cost which is around $17,000!
Please let me know more about what you are doing. Jan