Without this forum, my GCA journey would have been entirely different. You have all been there to support me, educate me, and reinforce me when I thought I was sinking. It has always made me sad that TCZ is only available to GCA patients for one year, subject to review for an additional year's treatment.
I've been on it for five years and will be kept on it as a safeguard when and if I get off of prednisone. I would love to think this may make it more available to patients in the UK. Do you think it will?
I wonder what the rheumatologists there think, especially those working in research and study.💞
PS. These meds have been researched, of course, and approved by the FDA in the States. Their side effects and risks are the same as Actemra. With my monthly delivery, I get at least 12 sheets of caution...I knew them when I opted to take the drug.💞
TYENNE® (tocilizumab-aazg) is a prescription medicine called an interleukin-6 (IL-6) receptor antagonist.
TYENNE is used:
To treat adults with moderately to severely active rheumatoid arthritis (RA) after at least one other medicine called a disease modifying antirheumatic drug (DMARD) has been used and did not work well
To treat adults with giant cell arteritis (GCA)
To treat patients with active polyarticular juvenile idiopathic arthritis (PJIA) 2 years of age and older
To treat patients with active systemic juvenile idiopathic arthritis (SJIA) 2 years of age and older
but according to research Tyenne done for FDA approval for distribution in the states can be used for patients with GCA.
The second one I am aware of, Tofidence , is not interchageable with Actemra, . The TOFIDENCE intravenous formulation is approved for the treatment of moderately to severely active rheumatoid arthritis, polyarticular juvenile idiopathic arthritis and systemic juvenile idiopathic arthritis. It is not available for at home injections at this point.
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Grammy80
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I think it will become available. It’s just not a good time to ask for anything from the NHS right now. However, in the 8 years that I have had PMR then GCA/LVV I have seen the profile of our diseases rise exponentially. I no longer expect a slightly blank look from strange doctors. I would like general doctors to be much more aware of the potential impact of long term steroid use on the Adrenal function. A recent, personal, hospital experience highlighted appalling pockets of ignorance.
I had my fingers crossed for all of you who would want it or wish to continue beyond the 52 weeks. I would agree Jane, that awareness has increased though every so often we still find someone who has been living under a rock. Sorry to hear you were recently in the hospital and hope you are doing well.💞
It is in hand to appeal the decision to limit the use of Actemra to 1 year - a study has been carried out to demonstrate the need for extended use of the biologic when patients relapse and use of MTX doesn't prevent that. I don't know if it has been submitted to NICE yet or how long the decision will take.
The main advantage of biosimilars it that they exert market pressure so the price of the original falls and so do they all. Biosimilars can be a similar price to the original initially, they aren't automatically significantly cheaper. Humira, for example, used to cost about the same as Actemra, IRO 17K dollars/euros per year for the drug, but my rheumy said last year that it has now got down to about 700 dollars/euros over a period of a few years.
Not all biosimilars are fully interchangeable under FDA approval but I think the EMA (European Medicines Agency) did approve that a couple of years ago. However - funding by the NHS is a slightly different process and who knows how their mills grind!!!
And the state of NHS funding means you may be lucky to get ANYTHING in the near future ...
I'm sorry to hear that things are so rough with the NHS...it would take a few hours to explain it all to me, I know. In the States availability of appointments in a reasonable time is becoming an issue in more rural areas. So far, in Northwestern Indiana, we have not been confronted with that. I believe it is because of our reasonable proximity to large cities and younger doctors who don't want to raise their families in them.
Yes! When I first took Actemra in 2019 in was $5000US for four pens, one month; two years later it was $4000. I just happened to notice a few months ago it is $3200. That would be way more than we could afford and fortunately we pay only $100 per month for health insurance; so I pay $11.00 per month for the drug. (My husband was a union electrician in a large steel mill and the union fights for good coverage for the retirees.) I know some folks pay much more but here you cannot go to the ER/AE for less that $5000-$8000 as my husband did recently after a fall; he had x-rays and five stitches. It will catch up with us in the States, I believe, because the hospital has to accept what the insurance pays and write off the balance after our insurance~~! Pluses and minuses abound!💞
I am a GCA patient and have just been changed from Actemra to TYENNE (I am attempting to taper from 10mg pred). My hospital pharmacy phoned me to say that this change was happening and were honest about the fact that it was because the drug was cheaper. Whether this affects me differently or means I can keep on it for longer I don't know but I still have 2 injections of Actemra left so I shall use those up first. I have a phone call from someone on the medical team later this week (unlikely to be the consultant!) so will quiz them about possible side effects.
Great Juliet, this was just what I was hoping to hear.....it is heart-wrenching to me to see someone doing so well on Actemra in the UK and risk losing it. I hope this is encouraging to others in the UK who may ask their consultants, rheumys etc. Actemra has dropped over $2000 US per month, I don't pay that!!! Thanks again, important for your countrymen to hear.
PS....I was a poor candidate for Actemra given other health issues....over my 83 years I have come to feel many treatments are a double-edged sword. Did you ever read Actemra's side effects...make me shudder, but I never had a one.💞
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