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.

Hello, on Wednesday I have an appointment with my Rheumy who insists I should take Actemra. I have been taking prednisone for 4 years, initially for PMRA and then for GCA. Prednisone has been hard on my skin, I have low muscular mass due to very low collagen that has affected my bone density, and hair

I’m 75 with GCA/PMR and taking 1.5 mg prednisone and Actemra every other week. Earlier this week while getting dressed I felt my heat beat really fast. Since I have a new Apple Watch, I checked my heart rate—it was 160. It didn’t go away for 4 hours, ranging from 130-160 beats per minute. My husband

Hello everyone, I have a different insurance provider for 2025 and their first order of business was to flag big-ticket treatments. Of course Actemra made it onto their list. They've agreed to cover its FDA-approved biosimilar, called Tyenne. As a GCA/ PMR sufferer currently stable (on weekly Actemra

I was fit until GCA diagnosed 7/9/19. Started on 60mgm Pred, then reducing. Had my first injection of Tocilizumab/Actemra on 23/12/20 and injected once a fortnight VG, then zero Prednisolone since 21/8/23.stopped Actemra March 2024, all good until flare confirmed 9/7/24. CRP11 & ESR36. Back on 20mgm

Hello everyone: Since last night, I have had pain, sensitivity and burning in my left temple and part of my scalp. At this point, I haven't taken prednisone for a month, I was only taking 2.5 mg. on alternate days. I take an Actemra injection every ten days. Could it be a relapse of my GCA?

Just administered my second Actermra injection after transitioning from infusions. Manufacturer reports incidence is >5% chance of developing a URI. I had a mild sore throat for one day after first poke. Now after second developed sore throat and nasal congestion for 4 days. No signs of serious infection

The last post I indicated I was stopping Actemra with approval from my doctor. I had gone two months without it and felt fine just being in 3Mg of prednisone. Since I am leaving on January 30 going south for two months I thought I would ask for my sed rate and CRP to be checked because I was starting

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.