Help!

[lindyloy]

I have just learned that tocilizumab has been extended to 2022, I understood that it was finishing this month. I have not been contacted for a home delivery, so contacted the spec. nurses last week (thurs) to say I had none left. They didnt contact me so rang and left another message today, they still havent got back to me. Is it correct that it has been extended? Thanks. (p.s. I know that you are supposed to contact the prescription team, but I needed advice on another matter so was going to mention it).

[SheffieldJane]

Yes it is true. I had an email from my Rheumatologist today confirming the fact that Tocilizumab has been extended until 22/3/22. You could speak to your supplier, mine is very helpful.

[PMRpro Ambassador]

MrsNails posted about it a day or so ago but it was about a Tweet from Prof Sarah Mackie with no further details. But it has been extended.

[Devoid]

Whoever prescribes it needs to do that, it’s not up to the delivery people, I have had no notification either and haven’t since the first extension. They seem totally unaware of the anxiety this causes

[SheffieldJane in reply to Devoid]

They have known more than me before now. Obviously your Rheumatologist is in charge of the prescribing but you need the suppliers to deliver it on time.

[Suzita76]

I have always had to pass the information about Tocilizumab extensions to my consultant- it’s unforgivable that they don’t keep up with all of this information. As Devoid says, they seem totally oblivious to the enormous stress the uncertainty causes. I did not run out only because I took my last 2 jabs at 2 -week intervals instead of weekly. Then I was phoned out of the blue on Monday to arrange my next delivery, but I’ve still heard nothing from my consultant.

[lindyloy in reply to Suzita76]

I wish I had done the same, did you still feel o.k. leaving it for 2wks. I have gone 13 days now.

[Suzita76 in reply to lindyloy]

Yes indeed, feeling absolutely fine. I had a 3-monthly blood test on Monday- fingers crossed for good results! Possibly, if 2 weekly injections turns out to be ok, NICE might feel more inclined to prescribe Tocilizumab as it would halve the cost. I am being sent for a PET-CT scan on Friday to see if 2 years on Tocilizumab might have helped reverse all the damage done to my major arteries by LVV. Very nervous I must admit!

[Rugger]

Yes, it is true. If you contact the home delivery people, they should chase up a prescription for you. Belt & braces approach!

[scottygirl73 in reply to Rugger]

My delivery pharmacy send me txt with date and time of delivery,if not suitable i can change it.x

[Rugger in reply to scottygirl73]

The thing is, they only deliver when they've received a prescription from our rheumy teams - chicken & egg, as well as belt & braces.....!

I'm sure things are more difficult all round because of Covid and altered working practices.

[lindyloy in reply to Rugger]

I got in touch with my Rheum. through her office on Thursday, and she sent me a letter today confirming that she was sending a Prescription out for everyone to receive a delivery as soon as possible, don't know exactly when, but just to take it as soon as it arrives, they don't deliver until the Hospital pharmacy sends out a Pres. Thanks for the update and advice everyone.

[AncientMariner]

I am about to face this conundrum soon as my one year allocation ends in August. Tocilizumab has enabled me to reduce my Prednisolone down to 7mg now and my Ophthalmologist wants to tackle the Methotrexate next but the whole exercise seems pointless if it stops. When asked about it the response I have is that it is kept under review so I have no idea, it is quite dispiriting as good progress has been made.

[PMRpro Ambassador in reply to AncientMariner]

Generally I believe the idea at the end of tocilizumab allocation is to switch to a DMARD such as methotrexate. So I wouldn't be too hasty in stopping the MTX.

[Rugger in reply to AncientMariner]

Your allocation of Tocilizumab won't end in August if you live in England, as NHS England have agreed to extend the date until end of March 2022. My Rheumatologist has already emailed to let me know. (Here is part of that email: "I have just been forwarded an email indicating that NHS England intend to extend the current "COVID extension" on prescribing of tocilizumab for GCA, which was due to expire at the end of June 2021, until the end of March 2022.")

Also see MrsNails' post regarding a tweet from Dr Sarah Mackie, one of the charity's patrons.

All the best.

[AncientMariner in reply to Rugger]

Thanks that is reassuring.

[Suzita76]

Yes indeed, feeling absolutely fine. I had a 3-monthly blood test on Monday- fingers crossed for good results! Possibly, if 2 weekly turns out to be ok, NICE might feel more inclined to prescribe Tocilizumab as it would halve the cost. I am being sent for a PET-CT scan on Friday to see if 2 years on Tocilizumab might have helped reverse all the damage done to my major arteries by LVV. Very nervous I must admit!

[lindyloy in reply to Suzita76]

I have the same, 3 PET-CT scans to date. Your post gave me hope as I didn't know that the jabs could be longer than 7days apart (unless you forget). The Rheum. said the delivery would be as soon as poss. Best wishes for friday, and also for the future, thanks for the info.

[Suzita76 in reply to lindyloy]

I read a while ago that the half-life of Tocilizumab is between 10 and 18 days, and some research was published where they trialled 1 weekly and 2 weekly jabs ; I must dig it out and re-read it! This will be my 3rd PET scan too ( I had a straight PET scan without the CT bit in 2016 to investigate lung abnormalities.... nothing to do with LCV- GCA. ). Thanks for your kind words. Xx

[PMRpro Ambassador in reply to Suzita76]

The original clinical trial had 2 cohorts - one on weekly and 1 on 2-weekly jabs. Although there was a slightly better result with the weekly, it wasn't a massive difference - and that was in the early stages of the disease. 2-weekly becomes more appropriate as time goes on anyway

[Suzita76 in reply to PMRpro]

Thank you, dear PMRpro- I knew you would have the appropriate info. at your fingertips!