Tocilizumab extension

[Devoid]

Hi I wrote a couple of weeks ago asking if anyone had been told that their tocilizumab was being extended. I’ve heard nothing from rheumatology or G.P but today I’ve had a txt from the company that deliver the injections to say they are delivering early March. Not sure if it’s the normal 8 weeks supply but at least it’s not stopping just yet

[PMRpro Ambassador]

Excellent!!!! I wonder if it is being extended to save people having to be seen by an NHS consultant for the next stage ...

[Devoid in reply to PMRpro]

I am trying not to get too excited in case just 2 doses arrive, but as I’ve not got a consultation with rheumatology in the near future I was starting to worry what was the plan

[PMRpro Ambassador in reply to Devoid]

I suppose one should be grateful SOMEONE has a plan!!!!

[Rugger in reply to PMRpro]

That was the idea of the first extension up to this April, but not a lot will have changed by then. It's not a great deal of help to me, as I started TCZ on March 13th 2020, so only a couple more weeks for me!

[Devoid in reply to Rugger]

Have you been told it will stop then ?

[Rugger in reply to Devoid]

My Rheumatologist said she'd apply for an extension for me, up to April, implying that was all it would be. I asked her if she thought the NHS would extend it further and she said she didn't know.

[Bachblues in reply to PMRpro]

What happens if you stop the Toc? ( so to speak...?)

[PMRpro Ambassador in reply to Bachblues]

Don't really know. I suppose it depends on whether the production of the IL-6 cytokine has been sent into remission by it which theoretically is what happened in the clinical trials. Whether a year is long enough for everyone and how long it lasts in GCA isn't yet known - usually patients were got off pred and then they reduced the tcz injections but if the year is not enough, who knows? Half of patients don't get off pred entirely but that is because their GCA is due to a couple of other mechanisms which don't respond to tcz.

But the bottom line may be that you need more pred if you are unlucky.

[Devoid in reply to Bachblues]

In the trial 50% relapsed if only had the 12 months but Nice refused to fund for any longer

[SheffieldJane]

Interesting.

[Rugger]

If the company are delivering, it means they will have had a prescription from your Rheumatology department. It will be interesting, to see what arrives. I have 3 doses in the fridge and I think that's my year up!

I'm seeing my Rheumatologist next month to discuss what happens next, but she did say she would apply for an extension for me - maybe just a few more weeks until April.

Let us know what you receive and if you hear any more news.

[Devoid in reply to Rugger]

Do you usually get as low as 3 doses before your next lot arrives or the company contact you with regards delivery?

[Bachblues in reply to Devoid]

The most I’ve had is what I have now for syringes full. I’m due to inject tomorrow morning. So I’ll be left with three!

[Rugger in reply to Devoid]

I've been as low as 2 doses. The company only deliver when they've received our prescriptions, so the weak link is the raising of the prescription or the processing of it by the local hospital pharmacy. Twice, the delivery company have had to make a special trip from Essex to Yorkshire, because of delays by the hospital pharmacy. What a waste of money - as if TCZ wasn't expensive enough!

Tomorrow, I will use one of the remaining 3 pens, so I'll be phoning the Rheumatology nurses to ask if I'm due another prescription or not!

[Devoid in reply to Rugger]

Well that’s made me very pleased with my service, I have always had a box (4) left when they have txt to schedule next delivery, it’s quite disconcerting to be down to your last injection

[Rugger in reply to Devoid]

I've taken my last injection this afternoon, but I heard 2 days ago that I've been given an extension until April. The fridge is empty, so I'll have to see if the delivery arrives in time for next week's injection...... There are worse things going on for others, so I'm not grumbling - it doesn't help if we do!

Let us know how many doses are in your next delivery!

[Devoid in reply to Rugger]

Hi they delivered 2 boxes on Monday so now I’ve got 10 doses which takes me to May 10th, I ve just done my first week with no pred , and so far so good. Hopefully the extra months on tocilizumab will be of benefit 😊

[Rugger in reply to Devoid]

Great news! I hope all goes well for you pred-free. 🤞

[Devoid in reply to Rugger]

Thanks everything crossed 😊

[Suzita76]

Hi there,

Following my very depressing phone consultation with my rheumy consultant a few weeks ago, she sent me a letter confirming that, unfortunately, my tocilizumab treatment must end in April as they had heard nothing more about any further extension.

She did not know when in April it would end..... I had to phone the delivery company to find out what prescription they still had for me, and they told me they would deliver my last 2 months’ worth in early March, to cover until the end of April. (The original NHS rapid response edict was very vague, just saying to extend “to April”).

So it seems we won’t get a reprieve beyond the end of April. Did you email your MP, and if so, did you get a reply? Personally, I am terribly depressed and panicked by this- I really cannot understand the rationale behind the NICE decision to limit Toc. to one year for GCA-LVV patients for whom there is no viable alternative treatment. If I suffer another relapse after stopping Toc. ( which is statistically highly likely, and which , in my case, will only be revealed by blood markers or PET-CT scan), then I shall be waiting expectantly for the stroke or aneurysm to see me off ( but then, who cares? We are just expendable old people).

[Devoid in reply to Suzita76]

Hi I rang the M.P office but need to chase it with an email, they obviously have no understanding of the effect stress has on this illness. I can’t see how they would want us to be having regular monitoring appointments any time soon, in fact it makes the original extension farcical if they do

[Devoid]

Interesting when you say post pred recovery takes time, I know another member said it was around the 12 months mark that she felt back to normal. I am not sure about stretching out the doses I have had my consultant appointment cancelled and find the rheumatology nurses who I can speak to for advice are very geared to rheumatology. Have you read anything research wise that suggests lengthening the gap or is it anecdotal evidence