tocilizumab after relapse

[Devoid]

Hi having felt unwell again and 8 weeks of steroids, reducing to zero I have had a positive ct pet scan again. Now back on steroids and a plan to commence lufludomine while consultant tries to get tocilizumab again. Has anyone had any luck with getting further scripts after relapse. Grateful for any information

[GoldieGarnet]

in Australia you can only get it for 1 year. I have gone off the injection. Have 6 months left 1 month in frig. I don't know if it helped at all. I am sick of the pain in the back and down leg. It didn't seem to make any difference having it of not I have also got myself off the steroids found leaving Gluten, Dairy, sugar out of diet helped Trial and Error

[Suzita76]

I recall a post not long ago from a GCA / LVV sufferer whose consultant had contacted the manufacturers (Roche?) on their behalf and had managed to obtain further personal prescriptions for Tocilizumab (at the NHS reduced cost).

NICE were supposed to be reconsidering / revisiting their one-year only decision on Tocilizumab provision for some GCA sufferers in 2021, but seem to have put it on the back burner, perhaps understandably during the pandemic but then during that time they approved several eye-wateringly expensive treatments for other conditions.

In my own case, I was fortunate with the timing of the Covid pandemic that my prescriptions were extended till March this year. Expecting/ fearing they would be stopped, I decided (unilaterally) to inject every 2 weeks since July 2021 (when a PET-CT scan showed all arterial inflammation had completely disappeared -the Tocilizumab had worked spectacularly well).

I managed to build up a small stock of injections and am now injecting every 3 weeks but am terrified as to what will happen when they run out ( by Christmas). My consultant (last seen in May) said it was extremely unlikely she would be able to procure more Tocilizumab for me, so if I have a relapse, there is no other treatment available to me- I had severe LVV, so if it returns, I will probably go blind, or suffer a stroke or ruptured aneurysm; I cannot tolerate Prednisolone at all and there really is no other viable alternative. My consultant said she did not think I would even be able to obtain private prescriptions because of the NICE 1-year stipulation.

This condition is potentially life-threatening ; the NHS provides treatments for other potentially life-threatening conditions (for instance, costing £100,000 to £200,000 per patient per year for life for haemophilia) so £5,000 p.a. for two-weekly Ro-Actemra injections looks like a bargain.

(Yes, I know I am ranting again - it seems to help somehow!).

[PMRpro Ambassador in reply to Suzita76]

Couldn't agree more. NICE's excuse is that the evidence for long term use was not presented to them - since it is approved for long term use in RA I'm blowed if I can understand what difference there is likely to be!