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.

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

As suggested by Lemonzest I’ve exchanged a few emails with Roche UK, and here’s their response: “I have discussed your query with our Medical Affairs team and they have confirmed that unfortunately funding extensions are no longer available in the UK for RoActemra.

I've been injecting TOC for just over a year, but in the last three months my neutrophil level has been falling and is now below normal at 1.6 x10^9. I understand that low neutrophils is a known side effect of TOC. My RA nurse asked if I have an infection but I'm not aware of one currently although

Came down with jaw pain and and calf claudication early August took a while to get an appontment with the Rhumy, luckly my Dr put me on some steriods early 25mg a day, week on and a week off untill I saw the Rhumy, Had the biopsy done and came back positive for GCA, everthing aches and pains and trouble

14 years and oh dear, the journey is not over yet! After 7 months off all meds, had a PET scan Xmas eve which showed GCA in my aorta from heart to abdomen. Back on Pred and Actemra. At least we know where it is now, as I’ve mostly had constitutional symptoms. I have 2 questions: what us the usual monitoring

I went transitional blind in 4/24. I was put on dexamethasone and had a temporal artery biopsy which was negative. I also had many immunity tests done. I also had irisitis with eye drops given in 2/24. I saw a rheumatologist in 5/24. I was diagnosed with GCA with a PMR overlap. I was started on Actemra

Update...as advised, raised from 3.25 to 8mg and rang Rheumy Dept to inform them of flare. Was offered an f2f appt today. Not my usual Rheumy, but very thorough. Sent me for ultrasound whilst I was there and returned to her for results...no sign of i flamation.Her opinion was that I was having too many

With my first time with GCA (2017) I tapered to 0 in 4 years. Then, after 1 year of 0 prednisone, I had a relapse . Now it’s 2025 and I’m on my second bout of GCA , this time with Actemra . It’s been over two years now and I’m trying to decide what to do. For the last 8 months, I’ve been on 1.5

Is scalp pain a sign of a flare with GCA?

I have been in remission with my GCA. I’m off Prednisone and just doing weekly injections of Actemra. I recently had the scalp pain that’s been gone for some time. Has anyone experienced this? The ER doctor put me on 50 mg Prednisone for 5 days and pain went away.

So far I consider myself blessed that one eye still has good vision. A couple of years ago, I was diagnosed with Macular Degeneration (MD). So, I considered my losing vision in my left eye part of MD. However, when I started having flashes of light and a rapid decline in vision in the left eye, my

Hi, I am PMR/GCA patient in US taking Actemra so I realize I may not receive a big response but thought I would give it a try. I am currently taking 30 mg prednisone/day and a monthly infusion of Actemra-3rd month. I started at 60mg/ day of prednisone back in August, 2024. Just got monthly blood

Currently on week 41 of Prednisone. Initially started on 15mg for PMR. Rheumy wouldn't listen to me and only pushed for me to be below 7.5mg wanting to add MTX which I wanted nothing to do with. Any taper below 10mg flared my symptoms. As my headaches continued to worsen I was fairly certain I had

Here we go … got the results of my blood tests this morning 😞 and both CRP and ESR have crept to 20. I’ve been off Actemra for almost 8 weeks and down to 5mgs of pred for 4 weeks, until two weeks ago. Rheumy asked me to stay on 5mgs until I see her in January but no, of course I know better, so I

Hi, I am GCA/PMR patient and currently taking 35mg prednisone and Actemra once a month. I have just tested negative for Covid after 5 days of testing positive. I am experiencing muscle aches in thighs and slight headache and eye ache. Looking for opinion on whether to up prednisone and treat symptoms

Hi again everyone. Last time I posted I had had a relapse of the GCA after having to pause the Actemra infusions due to pneumonia and sepsis. I am now back on Actemra (had my first infusion last month) and back down to 15 mg prednisone from the increase to 30 mg when I had the relapse. I have just found