Does anyone know anything abut tocizilumab (Actomorole) not sure of spelling. It is an IV now being used for Giant Cell Arteritis patients? My doctor said that it has less side effects than Methotrexate, wich I am afraid to go on to lower the prednisone as have a very small kidney and do not do well with drugs. I think it has been used since 2010 and was approved by the FDA for people with arthritis, especially children. Still trying to reduce the prednisone at slower pace this time. Down to 32.5 and 35 but get eye pain and headaches. Started at 60 mgs. in Dec. Any info. on this drug would be helpful. Losing too much weight too, got thrush and went on candida diet, so not much to eat either and just not hungry. Thanks for any input anyone can give me regarding Methotrexate verses the IV of tocizilumab.

6 Replies

  • Cassey, a study into Toxilizumab in the treatment of GCA has recently been carried out on 250 patients - the largest trial ever. It is completed but there are no results as yet. Apparently no-one dropped out of the trial due to side effects etc so that is a good sign. I haven't had personal experience with Methotrexate so am unable to help you re the side effects of that; however, I doubt it would ever be prescribed for me as I have reduced kidney function anyway. Hopefully, someone with personal experience of MTX will come along shortly.

  • Thanks, I am a bit worried too as was born with a tiny kidney that barely works.

  • Hi Cassey

    As Celtic notes, Roche is studying TCZ in GCA & PMR, but no published results yet. It's already approved for RA and SJIA. The major side effect is increased susceptibility to serious infection, as is the case w all the biologics. If u try meth, start at the lowest dose and insist on frequent blood chemistries to monitor/protect kidneys (and liver!). Since the PMR/GCA/RA SOC is to try & fail meth before adding biologics like TCZ (an unsuccessful meth trial is required to get insurance coverage for biological in the U.S. - not sure re this in the UK), perhaps u could ask ur MD if ur small kidney would be a legitimate contraindication to preclude meth for you without a trial.... That would bump you right on to the TCZ w/o risking the meth use. I can't get TCZ for PMR/GCA here in the states bc it's not yet FDA approved for PMR/GCA, so insurance won't cover its ridiculous price tag at this or in time!

    Just my thoughts...


  • Wow, very interesting. Just can't seem to get below 35 mg et to 32.5 and head aches and temperal arteries seem to appear with the headaches again.

  • I was on it for five infusions. It did bring my numbers down and I was able to exist on less prednisone. There were some side effects but less than the meth.. I stopped after I had a strange reaction...burning feeling throughout my body. It was my decision that it was not worth taking a drug that potent for just a small reduction in prednisone. I did come down with Shingles following taking that and one doctor inferred that it was the "messing with my immune system" that may have caused it. Who knows. My rheumy also said that my skin cancer return was a result of it. Just enough to make me wish I had not put it in my body. Hindsight is 20/20. Let me make clear....I have no proof that it caused anything....but in retrospect.....I would have not taken it.

  • Thank you for your iinput

You may also like...