Tocilizumab in the UK

[WaltzG]

I thought it may be helpful to share my Rheumy appointment yesterday. I have GCA and PMR and due to various reasons cannot tolerate Steriods. Instead I am treated with Methotrexate and tocilizumab which I received for a year as in standard in the UK. I was worried about what would happen when year expired which it now has. However learnt yesterday that almost certainly in remission anyway but should the inflammation start to rise again the NHS would then apply for a further year and I should get it again .....that feels like very good care and shows how wonderful our NHS can be. And may be reassuring for any UK people on here.

[DorsetLady PMRGCAuk volunteer]

Let’s hope TCZ is not required again -and that you are “almost certainly in remission” but just be aware you won’t know that until off all meds and no return of symptoms.

So fingers crossed.

[WaltzG in reply to DorsetLady]

I know.......but at least possible to get more ...fingers crossed indeed

[DorsetLady PMRGCAuk volunteer in reply to WaltzG]

Good luck -and as I said hope it doesn’t come to that…

[PMRpro Ambassador]

Comforting - but how long does it take to get that second bite of TCZ?

On what grounds is the rheumy so confident you are "almost certainly in remission"? You were in drug induced remission on TCZ - but will it last as the effects of the TCZ wear off?

[WaltzG in reply to PMRpro]

Yes still a lot of uncertainty will stay on methotrexate in Any case which controlled it before added tocilizumab. I would know if back get a lot of pain !!

[PMRpro Ambassador in reply to WaltzG]

You were lucky the MTX worked for you if you can't take pred. It made me so ill I couldn't continue.

[WaltzG in reply to PMRpro]

Yes I am lucky.....feel quite rough the day after I take it but worth it since the pain I had then went away....feel even better with the TCZ added so really hope I don't deteriorate.....

[PMRpro Ambassador in reply to WaltzG]

By the 3rd week, the roughness you feel lasted until about 12 hours before the next dose was due! I couldn't function so it simply wasn't on! No such problems with TCZ but it is unlikely I will get off pred altogether after over 14 years on it. Not that it ever really bothered me - except the 6 months or so I was on methyl pred which was horrendous! Weight gain, black beard, felt rubbish and needed 20mg to get any relief from the PMR symptoms and it took until mid-afternoon to appear.

[WaltzG in reply to PMRpro]

Aah that sounds awful....I guess I've been as lucky as we can be with this condition.....I had 2 steriod injections at very beginning and they made me completely aggressive and gave me hallucinations..really upset my adult children .....I was lucky the Methotrexate worked .

[autumnlass in reply to PMRpro]

😰… awful.

[WaltzG in reply to autumnlass]

Thx was quite scary

[Sharitone]

I'm very glad that you would be given another shot at TCZ if you need it, but rather puzzled, as several people here have been told they can't have more than the year and have relapsed.

I'm lucky in having an ongoing prescription, but I'm wondering why others haven't been allowed back on it. Did they give you any idea how they would wangle it?

[DorsetLady PMRGCAuk volunteer in reply to Sharitone]

Maybe because WaltzG is intolerant to Pred? Or has a very persuasive Rheumy 😉

[Sharitone in reply to DorsetLady]

So is it possible that other rheumies could be persuaded to be just as persuasive?

[DorsetLady PMRGCAuk volunteer in reply to Sharitone]

I really don’t know never having been in that situation.. and have to say was a bit surprised at the comment from Waltz’s Rheumy that it was even a possibility.

But unless you ask or have specific circumstances I guess you won’t know.

My reply about Rheumy was a bit tongue in cheek though … 😉

[Sharitone in reply to DorsetLady]

I believe mine stretched the truth rather - for which I am most grateful.

[WaltzG in reply to Sharitone]

My rheumy was very clear that should be successful due to my intolerance of pred. He said things have changed a bit in UK re additional year with a number of patients getting it .....

[Sharitone in reply to WaltzG]

That's really good news.