Actemra

[brenda1207]

I was diagnosed with GCA and PMR in 2018 and lost the vision in my right eye. I was on prednisone and methotrexate for over a year, but then I changed rheumatologists my new one recommended at Actemra actpen. I give myself a dose once every 3 weeks and it has been a great alternative to prednisone. My ESR and CRP numbers are always low. Just wondered if anyone on this side has ever tried Actemra?

[PMRpro Ambassador]

Now you have posted you will see all the related posts so do have a look at them. I see you posted on NRAS about weight gain with the Actemra 4 years ago. The way Actemra works means that the ESR and CRP are low - but it doesn't mean the GCA isn't active. It may still be producing the inflammatory substance but it can't take effect.

Quite a few of us are on Actemra, mostly for GCA as that is all it is approved for in our world in the UK. It is also only approved for 1 year in the UK though a few people got it for longer during Covid. They (NICE) claim they didn't get long term studies so can't approve it for long term use for GCA - but perversely they were quite happy to approve it in RA. Those of us not in the UK don;t have that problem and we do have some long term users, I've been on it for about 14 or 15 months and have finally got to 5mg pred - and am losing some weight.

Are you still having weight problems?

[brenda1207 in reply to PMRpro]

Thank you so much for your response!To be honest, I have had a weight problem my whole life, and a constant battle to keep the weight off. I have gained and lost over the last 5 years mainly depending on how much dieting I'm doing. I don't really think I can contribute any gain or loss particularly to of course when I was on Prednisone I did have the moon face associated with the high dosage. But I have not been on prednisone for a few years now.

[PMRpro Ambassador in reply to brenda1207]

Yes - me too, never been small and delicate again as I was until I had measles really badly!

However - pred weight gain can be helped by cutting carbs drastically even while you are on pred so may well be worth having a go at that approach now. One of the things Actemra has been found to do is cause weight gain by an increase in visceral fat, the bad sort, around abdominal organs. I had gained weight with untreated PMR and when I finally started pred I didn't gain weight - it rearranged itself to the usual places! I later managed to lose 35 lbs of pred and methyl pred related weight by really being consistent with very low carb eating, I have to go low to lose, but maintaining is easier. I have fewer problems with prednisolone and prednisone - methyl pred was a nightmare. I also - very unusually - gained weight on methotrexate, 1kg in 4 weeks before I said no more because of the adverse effects,

And another pain is that Actemra stops exercise having any effect on weight loss and visceral fat loss - not that it is much use anyway! However - since I got to 6mg pred with the Actemra, I have lost nearly 4kg without noticing! Probably because I have also been rather better about what I ate - while my husband was ill and after his death I wasn't very disciplined at all.

ncbi.nlm.nih.gov/pmc/articl...

science.org/doi/10.1126/sci...

[Frewen1 in reply to PMRpro]

hello everyone, this is a fascinating read… I am stuck with the horrible stomach fat, it seems , after 3 years on Pred and 1 on TCZ ( your Actemra , Brenda 1207 ) … had no idea that, even if I’d had the energy to exercise properly it would have made no difference. I try cutting some carbs (eating far fewer than I used to ) but still no change. Stone and a half overweight still, and down to 3 mgs. Do you think when TCZ runs out in August I’ll have a chance ?!

[PMRpro Ambassador in reply to Frewen1]

Don't know - I have lost weight while still on pred and TCZ, However - Snazzy and I both needed to get to VERY low levels of carbs to lose weight, practically keto levels, Maybe you haven't cut far enough?

[Sharitone]

Actemra does not necessarily cause significant weight gain. After 3 years on pred - finished in March - and 19 months on Actemra, I have a net weight loss of just over a stone, despite putting it on very fast at high doses of pred. I have not tried to lose weight, but I have reduced my carb intake, and appetite is generally a bit down. I can see that the belly fat has remained though. Just as well, seeing as I need something to inject into!