Hi! I haven’t posted for some time - but this is my bible and I read you every single day. I have just come back from my consultant - my 10th year of GCA. My consultant has raised my pred from 5mg to 7.5 mg and they want me to have tocilizumab - as well as my usual methotrexate.
They’ve have said that my GCA is for life. I'm 76 now!
Your comments and advice would be most gratefully received
THANK YOU!
Sorry to hear your GCA has gone on so long - are you sure they want on TCZ as well as MTX, you usually only get it offered [although only for 12 months in the UK] after you have tried 2 different DMARDs, MTX and Leflunomide being the most common.
AS MTX doesn't seem to be help that much, why not try TCZ - nothing to lose... if it doesn't suit you, you can stop it easily enough..and you never know it might be just the thing.
There are some on this forum who have used/are using it and they will be along - Rugger , Sharitone spring to mind - so hang on.
- but if you'd put the name of the drug in your title it would have brought up related posts.
Good luck with what you decide.
This quick search did bring up some posts -might be worth looking at the profiles of the authors whist you wait for replies -
I back what DorsetLady says. I would try the TCZ. It is quite pricey so you are lucky to be offered it during all the cutbacks!!
I was diagnosed in 2019 with GCA and have been on prednisone and Actemra since. Last year, as I tapered, another flare. Presently, I am down to 8mg plus weekly Actemra. I'm in the States....it has been decided I will stop tapering at 5mg...and stay on that daily plus the Actemra weekly.
If you've a stubborn case, and it sounds it, low prednisone and Actemra would be my choice... you have nothing to lose. I had no side effects. It is worth a try. I speak for myself when I say I would rather medicate at a low level and maintain my sight and a decent quality of life. My rheumatologist doesn't ever use metho for GCA...not saying he is right..just sharing. I'll certainly keep you in my thoughts.💞
My rheumatologist doesn't ever use metho for GCA...not saying he is right..just sharing
Our well known Rheumy in UK doesn’t think MTX does much for GCA either….😊
Interesting...🤔💞
I have had GCA coming up 8 years and have also been told I will take it with me to my grave. I started on actemra 3 months ago (and it is not funded here so costs me NZ$500 a week but first impressions are that it is worth it. I have managed to taper a lot and bloods have all settled any kidney function greatly improved and now am pre diabetic rather than having steroid induced diabetes. I think you should give it a go.
Not sure you will take it to your grave… if so you will be unusual.. but one never knows of course.
I think that they meant that I would continue to flare because i have over the past 8 years!
Well let’s hope they are wrong 😏
I would think Actemera plus pred could really help you- don’t know about combining it with methotrexate as well. As far as “I will always have it”- never say never. Sometimes these predictions are self fulfilling. Who knows how your body will react. 💐
As DL says, why not give TCZ a try? I've had my NHS 'ration' and felt very well on it, as it acts in a way to block the IL6 pathway that causes the inflammation in some of us. The downside is the 52 week limit on its being prescribed, so I'm now back on pred! TCZ bought me some quality time, for which I'm grateful. (A bit more info in my profile.)
It has side-effects, as all meds do, but you will be monitored regularly.
I am also 76 and in my 10th year!
Best wishes, whatever you decide.
Have a look at GivenUp24 post titled "Actemra". (Actemra is the brand name for Tocilizumab)
There is no guarantee that the TCZ will get you off pred entirely - I have it for PMR (I don't live in the UK), have beenon it for 3 years and am still at 7mg pred and suspect I might be better on 8mg. It only works for the inflammation caused by the IL-6 cytokine and that is only one of three different underlying causes. It is not a cure - it is a very expensive steroid sparer and when you stop it, you have a 50/50 likelihood of relapse.
Have you flared at 5mg or are you usually stable at that?
I am happy on Actemra but it was used because MTX isn't an option, it made me really unwell when I did try it briefly, and I was stuck at over 15mg pred after 13 years, 18 years of PMR. Had I been good at 7.5mg then I doubt my rheumy would have decided Actemra was required - after all, even with it, I am at 7mg. And personally - nothing would induce me to take pred, Actemra AND methotrexate.
I've had Actemra for 3 1/2 years. It got me from 15mg to 3mg and for that I'm really grateful. Though I also suspect I would be better with a tad more pred. The only down side is having to inject. I give myself an extra piece of chocolate to make up for it.
Like you, I'm expected to need treatment for life😡Novody has said why.
I have not had any obvious side effects from it. I also had it concurrently with MTX for a few months, but was finally allowed to stop MTX when it was obvious that it wasn't doing diddly squat for me. I would definitely give it a try if I were you. I take it your consultant is aware that you only get it for one year with GCA, but if the diagnosis is TA, then you get it ongoing?
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