Tocilizumab

[mackymoo]

Hello all,

I have had PMR for just over 2 years. A week ago I saw the Rheumatologist when he confirmed I have GCA.

He has asked me to consider going on Tocilizumab. I have concerns about the side effects of being on 2 drugs at once. Prednisolone and Tocilizumab. Can anyone advise from their experience please?

Thank you.

[PMRpro Ambassador]

I have been on both for the last 3+ years with absolutely no problems at all. The whole point of TCZ is to be able to reduce the high doses required in GCA to avoid vision loss more quickly so in GCA both drugs are ALWAYS used together at the start.

[Omakaat]

I was prescribed TCZ when my GCA flared after a too abrupt prednisone reduction. Took it for seven months, gained 13 kg and it had almost no effect on my prednisone intake. Guess I was just unlucky, because my specialist said about 50% of her GCA patients greatly benefited from it. Apart from the increased appetite I had no side effects. Stopped TCZ and lost the extra kilo’s. Wishing you a better result.

[Joseph14612 in reply to Omakaat]

I have PMR and GCA for almost 3 years.....Rheummy wants me to stay on TCZ even after 2 years and still on 15 mg Pred....no side effects but I don't think it makes any difference for me...started on 60 mg in the beginning and down to 15 but can't seem to go lower....

[Rugger]

Have a look at some of the related posts that have popped up at the side of your post.

I was on TCZ and pred for 2 years during the height of the Covid pandemic and I felt very well on it. TCZ enabled me to get down to zero pred, by slowly tapering. However, since my NHS 'ration' of TCZ finished, I have had to go back on pred. Currently on 3mg.

PMR: 2016

GCA-LVV: 2019

[Sharitone]

Try it! It's not like pred, in that if it doesn't suit you, you can give it up without tapering.

I've been on it for 3 1/2 years and have had no obvious side effects and have gone from being stuck on 15mg pred down to about 3mg. What's not to like about that? (Actually, the injecting, so you just promise yourself a small treat afterwards. Mine is an extra bit of dark chocolate)

[Micheal1956]

Hello Macymoo. All I can say is about my own experience. I had been on large dose of prednisone before going on TCZ. For the past 10 years approx. I have been having infusion of TCZ once a month and taking 5mg of prednisone each day (a fraction of what ibused to take. This has worked extremely well for me. I have polynyalgia and GCA and im 68. I now play walking football and pickle ball a few times a week. SobIm delighted with the results. Wishing you akl the best

[Kt1943]

I have been on both almost continuously for a couple of years with no problems. I had to pause the Tocilizumab for a few months as a precautionary measure after I had pneumonia and sepsis but no problems at all when I started it again.

[LemonZest11]

Give it a go ... worked wonderfully well for me.

[Strelitzia]

I was on prednisone while I did two years of TCZ to reduce from 30 mg quickly for GCA. I had no side effects that I am aware of. The GCA went into remission fairly quickly. Now I am reducing the remaining pred slowly for the PMR.