Experiences with

RoActemra

My neutrophils were showing low so Roactemra was reduced to bi weekly. Question does anyone else get these darts (sorry dont know how else to describe).

I've tapered off my steroids now completely and am on Roactemra. Recently blooda showed low neutrophils so now take Roactemra fortnightly. Recently have had a very painful shoulder GP thinks rotor cuff. Wondering is it related in anyway to GCA or side effect of mens. Anyone anything similar 😫

My question has this happened anyone here on Roactemra I have GCA 😫

I'm on Roactemra injections now bi weekly due to low neutrophils. Question anyone else on Roactemra wake in mornings with a dull headache. I've noticed it's usually worse in the days after the injection.

I was then given Tocilizumab(Roactemra) and until now it seems to be working😃.

Does anyone know when the Patent for RoActemra (Tocilizumab) expires. The NHS will currently only pay for one year of injections. Current private costs is approx £250 per syringe. Once expired the price will go down

I have PMR and GCA. On pred for 3 + years. On Actemra for same amount of time. I am not down to 6 mg of prednisone a day and have two things happening that I never had happen before. I am usually a really good sleeper. One is that I have weird temp variability at night and night sweats (not hormonal

Hello again expert panel Following up on my post before Easter: I want to follow up PMRpro's suggestion that I might benefit from Actemra to help with my recurring difficulties to taper prednisone. It has never been suggested by my rheumatologist, but he did suggest I consider Leflunomide which I

Here is a new list of abbreviations you may find useful. The previous list has gone AWOL! Let me know if there are others you would like us to include. AA Alendronic Acid – a medication used to prevent or treat Osteoporosis AA Aortic aneurysm AAA Abdominal aortic aneurysm Abx Antibiotics A &

I have GCA and after 18 months of prednisone and Actemra I have noticed my neck is really looking awful. I am looking for a Doctor for a neck lift or whatever they can do, but I wonder if I have another flare after June when I will complete my current course of prednisone would another round of prednisone

I have had GCA for 8 years, down to 2.5mg steroids and taking Actemra, TZ every 3 weeks. Now back to 2 weeks. I am having a bad flare since 8th March. Put my steroids gradually up to 5mg per day and taking naproxene as that sometimes helps. I am really unwell and struggling. Feeling miserable. I am meant

Hello there! I have PMR/GCA and have been taking Actemra for the last two years and am currently on 1.5 mg prednisone. I recently posted about a “supraventricular tachycardia” -I had a rapid heartbeat for 4 hours. While in the emergency room they did a LOT of CT & imaging tests. Their findings were

Wondering if anybody has had to transition from subcutaneous Actemra to intravenous Actemra? I’m currently on weekly subcutaneous while tapering prednisone, (down to 10 mg) and will soon need to get IV infusions because of changes to insurance. Were the side effects more pronounced with the IV? And

My inflammation is a stubborn arse. I was at 19 on 20mg and Dr told me to taper. I got to 10 mg and my marker went to 34. Now he is pushing Actemra, although I’ve had cancer, and I have diverticulosis. My ESR has always been normal. I’ve had 2 positive ANA tests as well. It’s so weird that as

I have a few chronic issues...like many of us. This is cautionary about the effects of steroids on seizure meds. I've been on seizure meds since 1955, my first grand mal at age 15. In 2019, I was diagnosed with GCA and lost the sight of my left eye. Because of the sight issues, my steroid dose

I have a few chronic issues...like many of us. This is cautionary about the effects of steroids on seizure meds. I've been on seizure meds since 1955, my first grand mal at age 15. In 2019, I was diagnosed with GCA and lost the sight of my left eye. Because of the sight issues, my steroid dose

I have a few chronic issues...like many of us. This is cautionary about the effects of steroids on seizure meds. I've been on seizure meds since 1955, my first grand mal at age 15. In 2019, I was diagnosed with GCA and lost the sight of my left eye. Because of the sight issues, my steroid dose

When I was diagnosed with GCA in 2019, I was on a low-maintenance dose of seizure meds because I had been seizure-free for 44 years. Initially, I was on 125mg of prednisone per day, and after three months, I experienced some auras, that warning one gets before a seizure. I was hospitalized and given

Hi everyone, I'm wondering if anyone else has felt like this after finishing Prednisolone. I think I did a 'faster than I should have' taper, but my blood test when down to 1mg back in Dec showed Cortisol level at 260 (range is 145 to 600). I am injecting Actemra fortnightly and will do until the

Hi everyone! Had my first Actemra injection last Wednesday. Last night I suddenly developed a sore throat, persistent headache and a heavy chest if I do too much. I know that some official patient info sheets for Actemra say you should contact your doctor if you develop a cold etc. I’m just wondering