Tocilizumab after one year

[JcDc527980]

Hi there

I’ve had GCA for two years and been prescribed Tocilizumab for the last year I’m just coming up to the last 3 injections my consultant has told me that I can’t continue with this drug because of the cost which seems very unfair. Over the last few months my consultant has tried me on; Azathioprine, Mycophenolate Mofetil, Leflunomide none of which agreed with me side effects; nausea, headaches, dizziness and generally feeling unwell at my last appointment I asked if my consultant could make a case for me which she replied NO if we did it for you we would need to do it for everyone in the same position.

is anyone else having this problem?

Lynne H

[DorsetLady PMRGCAuk volunteer]

is anyone else having this problem?

Almost everyone in the UK that has been on TCZ for GCA.

Unfortunately the original trial pre 2018 was only conducted over the period of a year, so consequently when authorised for GCA - that timescale was stipulated. The only extension for some was during Cvid - and that was only by 6 months.

The charity and some prominent rheumatologists are trying to get the time extended.. as it is in other diseases.

Until that happens, it's 12 months only - and not sure [even if they wanted to] your rheumy could change it.

Have you tried Methotrexate?

What does of Pred are you on now? You may not require anything other than Pred, many of us have got through GCA quite successfully without TCZ.

IRO £12k per annum, cost obviously is a major factor.

[JcDc527980 in reply to DorsetLady]

Yes was on Methotrexate for a time but had to come off it because there was a problem with my liver unfortunately.

I’m taking 5mg daily of Pred.

[DorsetLady PMRGCAuk volunteer in reply to JcDc527980]

As you are down to 5mg, do you really need to add in anything else? To be at that level within 2 years, I think I might be inclined to give it a go on its own. You could try for a while and see how it goes… just a thought.. 😊

[JcDc527980 in reply to DorsetLady]

As I’ve got no choice anyway let’s see how it plays out…….🤔

[Rugger]

Yes, I am one of those in the same position. My ration of TCZ finished in the summer of 2022. My Rheumatologist tried me with MTX, but it didn't do anything for me.

I'm on pred alone and down to 3mg.

PMR: 2016

GCA-LVV: 2019

[JcDc527980 in reply to Rugger]

I can’t wait to get down further on pred. I’ve put on three stone on over the last 2 years it’s so frustrating it’s not for what I eat which is very little…

[Koalajane in reply to JcDc527980]

But have you lowered the amount of carbs you eat

[JcDc527980 in reply to Koalajane]

I have reduced my calories I will look again at the carbs

[PMRpro Ambassador in reply to JcDc527980]

Calories don't cut the mustard when you are on pred - cutting carbs is far more effective.

[Mgpa]

since coming off Toc I have had no problems at all. I’m in a maintenance dose of 2mg of Pred but that’s all. Michael

[JcDc527980 in reply to Mgpa]

Thank you so much it’s giving me encouragement for when I stop the Tocilizumab and good that you’re on just 2mg pred.

[LemonZest11]

Yes, just 12 months of TCZ here in Australia, same as UK. If you are convinced that TCZ is making a difference and you are committed to that drug alone, rather than Methotrexate or Leflunamide et al, go directly to Roche. They have a program by which they will subsidise you. BUT, you must have your Rheumatologist’s approval as she/he needs to sign off on it.

[Angelsmummy]

Hi,I was no good on Methotrexate,or Leflunomide for my GCA,got down to 7 and 1/2 mg.Rheumy tried to get me on TCZ but some wise people told me “ why when you are so low” I declined it,am now at 5 and 1/2 mg doing a 7 week taper to 5 mg.Pred Alone!!Maybe I will be lucky like DL ,hopefully I will be !Think positive about being able to do it.PS I am 23 months in with my GCA and PMR !Good luck!xx🌼😜

[JcDc527980 in reply to Angelsmummy]

Thank you you’ve given me encouragement

[Angelsmummy in reply to JcDc527980]

We all encourage each other on here,we all understand what each of us are going through.,Good luck!xx💐😜