What next?

[lindyloy]

Anybody know what date in March tocilizumab stops please? I finished Pred. in October and I haven't been informed what's happening, I haven't got a phone appt. so wandered if anyone knew. Thanks.

[SheffieldJane]

I just found an NHS document that simply said April 2022. I saw my Rheumatologist yesterday and expressed my wish to try Pred alone after stopping Tocilizumab, I am currently on 7 mgs of Entric coated Prednisalone. She was suggesting Methotrexate should my symptoms return. Tocilizumab has caused me to have a fatty liver that is also in the side effects of Methotrexate, so if I flare I am left with increasing Pred as my only option. I hope this answers your question a little. How are you?

[lindyloy in reply to SheffieldJane]

You actually saw your Rheumy, wow! I finished Pred. in October, I last spoke to my Rheum. before then. I have all the niggles I had before the GCA. came along, (hips, back, aching joints etc.) but none of the GCA symptoms, also, I have put the weight I lost when taking Pred. back on (about a stone) weird! I don't feel right, in fact I failed at my first attempt at tapering and was glad when she said I could go back on 5mgs. of Pred. This was good, but she wanted me off that as well, so off I went again. She said it was to stop a possible flair. Imust admit, I feel a bit abandoned, (or maybe I'm just feeling sorry for myself), I'm due a Synacthen test so I hope thats o.k. Methotrexate has been mentioned but I don't like the sound of it. I regularly visit the Hospital in leeds (where I am an out-patient,or was before they moved it) with my husband, Iam his carer, his Consultants see him and I hope it's not too long before things get back to normal for us all, Hope you stay well and take care.

[Rugger]

As far as I am aware it is March 31st. It happens that my last weekly dose would be on March 30th!

[SheffieldJane in reply to Rugger]

I asked Sarah if my refrigerated, sealed, unused doses could be used for other patients. She said no, because you don’t have an industrial fridge……..what!?

[PMRpro Ambassador in reply to SheffieldJane]

Has to be controlled conditions - much more accurate and monitored temperature You might have left the door ajar, put something a bit warm next to it, it may be an elderly fridge - I can tell the difference with my horribly expensive, digital, new fridgefreezer compared with the old one! It is still usable after however long you have had it, but legally speaking for someone else it is another matter.

[SheffieldJane in reply to PMRpro]

Yes, but what about me? Also the hotel fridge and Ferry fridge my dose has been in. Sorry I am saying this with a small roll of the eyes. I am done with it and I really tried.

[PMRpro Ambassador in reply to SheffieldJane]

It;s fine for short periods - but for distribution to others ...

Are you really stopping TCZ?

[SheffieldJane in reply to PMRpro]

Yes. I keep getting infections and just generally feeling lousy . 3 weeks without it and it’s like a great weight has lifted. I feel guilty that I haven’t made it work like so many others have and I know I was fortunate to be allowed to try it. The expense doesn’t bear thinking about. I was able to get from 40 mgs to 10 mgs of Pred in record time. Then really nothing. Perhaps the GCA/LVV has gone into remission (2 Years)? It was never Temporal Arteritis so I kept blaming the constitutional symptoms on my GCA, but they’ve gone and I believe the pains I have are osteoarthritis. I have had so many scans and tests. We are lucky in that with the NHS. Then there is the suspected Pelvic Congestion to keep me busy in a (patriarchal ageist) medical system where I don’t figure prominently. 😐 Mini rant, 4 hospitals, no Gynaecology Appointments.

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

I feel guilty that I haven’t made it work like so many others have …

You shouldn’t feel guilty - you’ve tried - and it if doesn’t work for you, it doesn’t - not your fault.

As for the cost, it pales into insignificance compared to that wasted on covid PPE that wasn’t fit for purpose.

Do hope you can get the relief you deserve 🌸

[lindyloy in reply to SheffieldJane]

I know how you feel, I wish there was a way that I could stay on a small amount of Pred. for a while and see what the result would be, but I thought that when I tapered and had no Pred. at all, I would feel energised, but me being a bit thick, I was soon to learn otherwise. Ah well, time will tell.

[Nextoneplease in reply to SheffieldJane]

Oh SheffieldJane, I’m sorry you’ve been feeling so lousy. Hope you feel better soon - and that the (patriarchal ageist) system jumps to it and does it’s duty by you 🤗🤗xx

[PMRpro Ambassador in reply to SheffieldJane]

Not your fault - even if your notes probably say "Failed TCZ". That isn't what it means. And only half of GCA/TCZ patients got much below 8-10mg pred in the Giacta trial.

I suspect that when it is good, it is very very good, but when it is bad, it's horrid ...

[sequeluk]

Why do you think it is being stopped? I’m on Tocilizumab and have had it extended until at least August 2022. There has been no suggestion on my recent appointments that there is a problem with prescribing it.

[PMRpro Ambassador in reply to sequeluk]

The approval by NICE was initially limited both in terms of who could have it but also for how long - 1 year, irrespective of the number of injections (it can be administered weekly or bi-weekly). Because of the constraints of seeing rheumatologists during the Covid situation, the period was extended to 2 years - and it is unlikely they will extend it again. But never say never as there is some suggestion the period of funding COULD be extended.

[Rugger in reply to sequeluk]

This document explains that the extension of the one year's allocation of TCZ for GCA is until April 2022.

england.nhs.uk/coronavirus/...

It is NHS England - maybe you are in another country of the UK, or maybe you didn't start TCZ until August 2021?

[sequeluk in reply to Rugger]

I am in England and you are right as I didn't start until August 2021 so I assume I will be ok for the 12 months prescription that was part of the the original NICE recommendations for treatment which will apply from April onwards and presumably will still apply for new patients that have not been on Tocilizumab before.

[Rugger in reply to sequeluk]

Check with whoever prescribed TCZ for you, but I imagine you will have the 12 month allocation, from August 2021 to August 2022. For those of us who were 'fortunate' enough to have an extension during the pandemic, that expires on March 31st 2022. Best wishes.

[Luciejc]

I am also in the US and have been affected by the shortage. My last delivery was only 4 instead of 12 injections. I've switched to every other week and was on a waiting list. I will call be getting a delivery tomorrow but have no idea the number of doses. I was told to call on Monday to put myself back on the waiting list. March doesn't look look too good from here.

[LemonZest11]

Isn't it such a bug*@r that we just can't get any more TCZ, for those of us for whom it is working? I'm making an attempt to get an extension to the allocation down here in Aus, slow process and I don't really feel that optimistic. The thought of methotrexate freaks me out. Hang in there TCZ warriors, I hope you get that funding in the UK!

[Rugger in reply to LemonZest11]

I saw my Rheumatologist last week and it's MTX for me when the TCZ runs out. No more to be said.....!

[SheffieldJane]

Thanks for this. Both my Rheumatologist and my GP seem to think that my recent blood tests, particularly the liver results are a contraindication for Tocilizumab . I suppose Pred is non negotiable with GCA however, I think I’ve reached a place where I can envisage another sustained taper.