I am due to inject tomorrow and only discovered my Actemra had been withdrawn due to funding 5 days ago after I had been told they had no prescription for me. So I have no injections and no warning. I was on the drug trial and categorically told the one year rule would not apply to me. NICE have only approved the drug for one year. This drug has been amazing for me - GCA had been a life changer and Actemra gave me my life back. I am very fearful about what will happen next. Can anyone tell me their experiences of coming off Actemra. I was taking it 3 weekly successfully for 2 years and trying to get down to 4 weekly but get relapse after 3 1/2 weeks. I am starting on mycophenalate - which had helped somewhat in the past - but no where near as good as actemra, but that takes 2 months to kick in. Have sent pleading email which is being considered. If I get ill again I would consider funding it myself - at 3 weekly I think it should be about £3500 per year but have no idea how to get a private prescription. All very worrying. One more step into the unknown ....
Tocilizumab(Actemra) withdrawn: I am due to inject... - PMRGCAuk
Tocilizumab(Actemra) withdrawn
I hope you are successful in your appeal. Your doctors have a duty of care towards you and need to answer your questions in detail. I hope one of the members can share their experience. You must be feeling shocked and worried.
This must be horrible for you. I am in Scotland and on my 28th injection and on 2 mg Prednisolone . I am hoping to be able to continue the year at least but was hoping for longer if required.
Hope someone helps you stay on Actemra.
After exhausting all NHS options poss try the manufacturer.
GP can write private prescriptions I believe.
Good Luck
I am in Scotland to,it is good to hear someone else is on Actemra i have infusions every 4 weeks,did you ever have this?xx
Hi, no, never had infusions but had weekly self injections. They are a doddle. I am back at specialist vasculitis nurse on the24 th and will bring up this then. Hope we can all continue on Toc. There must be more of, perhaps they haven’t found this site yet? X
I started with two monthly infusions and then injected weekly, then two weekly, then 3 weekly but struggled to get to 4 weeks. The injections I did myself, the pharmacy delivers them and they are easy to do. I am told you can now have a pen version - like an epipen to take them.
Yes mine is an epipen. Weekly at present.
Sorry to hear that successful treatment us being withdrawn for you. I would check it can be prescribed privately before you get your hopes up. You are already beyond the year of treatment recommended by NICE and I not sure what can be done. I have been searching online but can't find anything. It would be helpful to know in case other members have similar issues. Keep your chin up and stay in touch it's a big blow to manage. 🌻
Oh shocking to you. To find something that works and its taken away. I hope you can get something sorted out.
Thanks everyone for your kind advice. Waiting to hear still.
Sorry to her this and fingers crossedfor your appeal. Shouldn’t be happening.
The last time I looked tocilizumab was about £12,000 per year.
This
bnf.nice.org.uk/medicinal-f...
says £913 per 4 pre-packed injections - that will be the NHS price, not entirely sure that that will apply to a private prescription though.
I did say at the time that approving it for only a year was rather pointless. And I would be very interested to know how long it is approved for for patients with RA.
Good point.
Not sure about approval but this research says efficacy peaks 12 to 24 mths but withdrawing or reducing dose leads to relapse of ra (I think....my phone seems smaller everyday!)
ncbi.nlm.nih.gov/pmc/articl...
Thanks but that article seems to be about rheumatoid arthritis and i have it for GCA, not sure the results would be the same.
Sorry to confuse you, I was responding to pmrpro wondering whether RA had a time limit for using biologics. I realise you have GCA. I find it interesting though that these types of drugs are not stand alone drugs like pred can be. For GCA the idea is the reduce but still use pred, just getting total potential dose reduced...but how long is a piece of string. For RA they talk about combining actemra with mext in similar way. Again, sorry to confuse you! Still rambling about it!!🙄
Which does seem to suggest it is used longer than a year for RA. So what is special about them???????
That's what I've thought. They did the 12mth research barrier, now 24 months. They may find it's still peaking at 3 yes despite current claims. So it really does indicate that a longer treatment is required for anything that's based on effeciency.
I’ve been on weekly injections of Actemra for two years. It’s been great - no side effects whatever and totally off pred and methotrexate for a year. Still have mild symptoms, but am able to exercise as I wish, travel a lot, and feel well. But I’m in the US. The drug company recently approved me to continue with only a $5/month co-pay. I wonder if appealing directly to the company might help? I get mine through a university and they do all the negotiating for me , so an academic medical facility might be able to provide some assistance. I wish you well. It’s been a good drug for me.
Not in the UK I fear.
I've been on weekly injections for 12 months and am waiting to hear if I can carry it on. It
seems that the 12 months limit was set up when it was being paid for by the drug company but that NHS Scotland do prescribe it for longer periods. He said I wouldn't have got to my present dose of Prednisolone (12mg) without the help of Roactemra.
Perhaps it depends if we have kicked the Prednisolone into touch, at around the 6 months or so mark, or not.
Good news for those still needing the help.🤞
In the case of TCZ it is a mechanism involving IL-6 - which turns up in various a/i disorders.
Christine2715,
I am also on Actemra/Tocilizumab and have been on it for two years. I agree with you it is very effective. I am no expert but I was told not to stop the injections abruptly but only when my Doctor started to taper me. You may want to talk to your Doctor about this problem.
I am in the USA and Genentech has a program to help pay for Actemra. I hope this helps and good luck with the Doctors.
All of these comments have been very useful. I think a lot depends on whether the GCA goes into remission. I am still awaiting a response to my pleading email to the pharmacist.
With ring the hospital tomorrow as I haven't heard anything yet.
Quite - but no-one has entirely got to that for PMR yet since there are several mechanisms going on either concurrently or variously. Actemra works for one but not all. So for some it will get them off pred - as long as they take the Actemra. Others may get to a lower dose - as long as they take Actemra. But every healthcare provider in the world, private or public, would go under if every patient got the biologic they need for life which is what it can mean.
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