Surgery successfully next step actemra: BCC surgery... - PMRGCAuk

PMRGCAuk

14,123 members25,705 posts

Surgery successfully next step actemra

Spanky2019 profile image

BCC surgery successfully completed. Dr says if no sign of infection in incision, in 1 more week I should start Actemra. There's alot of negative things about Actemra, including heart issues and increased skin cancer risk. I'm at 25 mg prednisone now and feeling pretty good. Not losing weight anymore and have chubby cheeks from pred. Been on prednisone 8 or 9 months, much of this time 80, 60 and 40 mgs.Every time we've gradually reduced to 15 mg pred the gca symptoms return, crp & sed rate rises. Would appreciate thoughts, experience, opinions about Actemra for gca to reduce prednisone dose.

13 Replies

Good luck Spanky2019. I would be cautiously optimistic. Actemra is an unknown country to me, I wish you every good thing that it can do for you. 🌺

PMRpro profile image
PMRproAmbassador

So are you saying that at 20mg you are still OK? You do have the option of Actemra - but given the way you have yoyo'd the dose to be at 20 or less after 9 months is not bad for GCA. Just my opinion of course.

Spanky2019 profile image
Spanky2019 in reply to PMRpro

Yes. I'm at 25 mg and am feeling pretty good. Seems it took pred a long time to really impact all symptoms of gca. I have the Actemra but before going ahead with another potentially toxic drug, better plan may be to slow taper with this forums plan and see how I do this time.

in reply to Spanky2019

Spanky, excellent news re surgery. I think you have done great as its not been an easy road and you are down to a tolerable level of pred at 9mths to taper very slowly at 10% a month or less - I would be 1mg a month. See if you can reassess every 3 months before you decide re actemra or you can decide to give it 12months and see what happens if you tolerate it. You may get to just over 15 and feel OK then to slowly go down. Some people have positive feedback Re actemra, around 50% in the first year I believe. Given the surgery I can understand your reticence.

Spanky2019 profile image
Spanky2019 in reply to

Thank you. Appreciate your advice and support so much.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Actemra is not used extensively in UK and only fairly recently authorised for GCA - so you are unlikely to get very much response from here.

There are patients in other parts of the world who will advise idc

Hi I was diagnosed last June with LVV had only minimal improvement on steroids but all the unwanted side effects, had methotrexate added without any improvement, then actemera from November, improvement noted after 3 rd injection, now on 9 mg steroids dropping 1 per month now, no side effects from injections, still experiencing fatigue which has been a big issue from the start

Spanky2019 profile image
Spanky2019 in reply to Devoid

Thank you for info. What a journey this is!

PMR in 2011, GCA in 2017. Started Actemra in 2018 (was at 20mg Pred at the time). Took about 4-6 shots to kick in (weekly). Took a full year to taper Pred. Have been Pred free for 1 year and Actemra now every 10 days. Feel good. No side effects, good energy level, PMR feels “gone” though still get stiff if sitting still too long. Very careful about germs and diet. Continued with low carb no sweets which has prevented yeast/mouth sores a more common side effect. Did get a cold Year one which absolutely walloped me but otherwise been well. Would recommend investigating thoroughly but I’ve been very pleased.

Spanky2019 profile image
Spanky2019 in reply to PMR2011

Thank you. Actemra sounds like it may be worth the risk.

YuliK profile image
YuliK in reply to Spanky2019

I was offered Actemra or methotrexate, but as I have liver problems , I can’t take these medications.

YuliK 😷

No problem with Actemra/ Tocilizumab.

My journey is in my rather long profile.

Off Prednisolone within 7 months of starting weekly injections.

Have only 3 injections left as I have to stop after 12 months.

Hoping it has done its job by then.

Thank you Chrisellie. Hope all goes well.

You may also like...