PMRGCAuk is delighted to announce that today is a really big day!
NICE, the National Institute of Health and Clinical Excellence, has approved the use of tocilizumab on the second round of consultation, subject to their final appraisal report on 22 March.
It will only be available for relapsing and refractory patients (those who don't respond to steroids) for a maximum of one year. But this is a great start.
There hasn't been a reliable new drug for GCA for 70 years, when steroids were first used in a case in France. And since then it's been steroids, steroids, steroids all the way.
Tocilizumab is extremely expensive - but we are confident that this approval will open the doors to more drug companies working to develop reliable new drugs, to bring GCA out of the shadows for good.
And where GCA leads, PMR will follow!
Written by
Polywotsit
PMRGCAuk team member
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Now we just have to get through to GPs for a start and, on the evidence of what I have seen over the last few weeks, some rheumatologists, what GCA looks like (a wide variation of presentations) and that a negative biopsy does NOT mean it isn't GCA...
Baskhar Dasgupta must be feeling rather pleased.
This is amazing news!!!!! Thanks Kate, et al, for all of your hard work!
HI SheffieldJane, I know... I'm so excited! I have been referred/accepted to my same (private) Rheumy, under NHS. My first appointment with her (under NHS) will be April 16th, and we will be talking about this for sure!!!!! I'd even be wiling to subsidise the cost is that is going to be the concern... I think the array of ups and downs I've had in 4 short months, maybe indicate that I'm going to be a "problem child," and if so, let's try some alternative options now instead of just the conventional therapy for 1-2 years; only to then recognise it's not working.
I doubt they'll agree though... they will make me wait and try everything else. : (
This has to be good news and answers a query this week from someone who was concerned about losing her “ special case” Tocilizumab prescription. I hope she sees this.
Kate told her in the thread that whatever was decided, NICE had said it didn't affect existing use of tcz for GCA. Though whether the year limit will apply remains to be seen I suppose.
With that Cancer drug that they wouldn’t support, people were just taken off it. I can’t remember it’s name but it was said to extend life by about 6 weeks.
In the media you mean? They take the maximum length of improvement, even if it was 1 patient it was seen in. But if I remember rightly - it made tcz look cheap! And they use a measure of QALYS - the quality of the life figures highly. If the patient might live 2 or 3 weeks more if they are lucky but the entire time feel so unwell they can't do anything - is it justifiable to spends tens of thousands of pounds on that one patient? When the extension of life isn't guaranteed? Often patients have a far better quality of life by stopping chemotherapy altogether - shorter but well almost the entire time. Has to be considered.
There's a strong body of opinion building up in the BSR now that there needs to be thorough monitoring of the use of TCZ so that there is proper evidence for any appeals or changes in the future. NICE are concerned about the floodgates opening. This is a valid concern because with RA, for example, there are many 'second line' alternatives to steroids so TCZ is a kind of last resort. What we must work for now is proper trials of other possible second line medications.
Hmmm - floodgates in a rare condition? But there are several IL-6 inhibitors on line at present - and TCZ does come out of patent in the foreseeable future.
That is so wonderful! As someone who is taking Tocilizumab on the NHS , I have had a completely life changing experience. I was so so ill for over 18 months and it has been almost a total cure for me. I feel as if I was in a dark tunnel and came out into the light! I hope that they will continue funding after a year if I need it. I think maybe the next thing will be for me to have injections fortnightly rather than weekly. Sense seems to have won over at last. Thanks to all who helped bring this about. By the way - Prof. Das Gupta is a wonderful consultant. Worth the 2 1/2 hr trip for me to Southend
Congratulations! Job well done! I am on Actemra/Tocilizumab and think it is very effective. It is great that NICE has made it available to the GCA patients (my fellow club members). Well done Kate.
Well done! And thank you for all your hard work, Kate. The more treatments available the better, especially for those whose journey has been difficult.
Great news! Thank you to all those responsible for the strong submissions from PMRGCAuk and The British Society for Rheumatology, not forgetting the patients and carers who also submitted individual responses.
Yes, tocilizumab also approved in States recently for GCA by FDA.
Just as an aside , some USA FDA officials have been known to be subject to manipulations by the drug manufacturers; this has happened with oxycontin, the narcotic implicated in the so-called opiate crisis declared by US, , now resulting in draconian rules with force of law virtually stopping physicians from prescribing narcotics to people in chronic pain unless it is cancer and terminal.
And with Procrit, a drug used to treat anemia to avoid transfusions, and which was illegally used by American cyclist Lance Armstrong to win the Tour d'France multiple times to which he later confessed.
Both drugs, although entirely different, "approved" caused deaths. Just because a national agency approves a drug doesn't mean it is safe and effective, although that is the purported goal of such agencies.
I do hope it works ; in the States neuro-ophthalmologists are also treating GCA and have been involved in studies of tocilizumab 's effectiveness and safety. BUT I DO HOPE IT WORKS.
My Rheumatologist must be reading this Column of late, as I think he has made himself aware ,in depth, of the latest in PMR/GCA. His Nurse made a follow up after my last Appt. noting my Vit D level was low ,never happened before. I spoke to her on a number of points allied to PMR/GCA and when I mentioned Tocilizumab she knew about it and other matters.Whoopee!I know it is expensive but so is 5-6 years so far and with other allied health matters- must also consider age also- that is also very expensive for the treatment and care. Might yet get back to scuba diving!!!!!!!!! John
I’ve been on Actema for 8 months and have been pleased with the results. No side effects at all. My doctors and pharm have worked with Genentech to make it affordable. It’s def an individual decision and treatment plan and prob not for everyone. I’ve attached a link to a small UK study using Actemra as a first line treatment - pretty interesting. Since it’s a biologic, it requires biologic material to produce, so production is slow and expensive. There are several places (Japan being one of them) where companies are researching ways to make a synthetic version. It would be much less expensive if mass produced and would be a more affordable choice, if dr/pt opted for treatment. I’m following that development and hopeful it’s possible.
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