Experiences with

RoActemra

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 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).

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

I started using RoActemra (Tocilizumab on Tuesday and the nurse said there was a calendar you could get so you could record the date and which side (my tummy) you did the injection. What do other people do who are on weekly injections? Thank you.

completely flummoxed, any suggestions? Have been off Actemra for 6 months. Have generally been feeling good. No symptoms of PMR. Do get slightly hoarse with fatigue in the evenings, but no issues with low grade temp or night sweats that were my GCA symptoms. Went for routine follow up Rheumie apt today

I have discussed my journey with PMR and GCA a few times here. February will mark 5 years since I was diagnosed, though I'm sure I had it for 2 years before I was diagnosed. I have not had very good luck with tapering off the prednisone. I have been on Kevzara injections for about 3 months but started

I am curious to know how those of you taking Actemra and Prednisone manage events such as theater shows, movies, etc. in light of our immune suppression. I have been very careful over the past months, but am wishing to attend a few Christmas shows. Currently, flu and Covid rates are low in my area. It's

I need your wise advice if you don't mind. Last month I travelled to the Mayo Clinic for advice on how to proceed with my PMR, and presumed GCA. My blood work and scans and MRI's showed no inflammation, so I was advised to rapidly taper the Prednisone which was at 30mg and continue the weekly Actemra

It’s been an adventurous couple of weeks hoping for some advice from the usual friends on here. 1. Because of continuously low neutrophils, Rheumatologist referred me to haematologist who told me that I have managed this scenario for over 5 years and to just continue to fight for my own decisions.

My friend hasn't been able to figure out how to ask questions on HealthUnlocked so I am asking for her. She was diagnosed with GCA in April 2024. She was put on Prednisone and once a month goes to doc for infusion of Actemra. She is currently on 15 mg of Pred and doc has her tapering 2.5 mg every 15

Thank you all for the support. Those virtual hugs feel great!!! It is Tuesday night in Indiana. Yesterday was such a full day: rheumy in the am, vote in our election, and primary care physician in the pm as a follow-up from the hospital. Finally, today, I am at the computer a bit. When we got home,

Hello old pals, It’s been a couple of months so here’s the latest … my neutrophils refuse to behave!! We stretched the Actemra shots to fortnightly but they have dropped to 0.4 and doc is concerned. I am down to 5mgs of pred and feeling absolutely no pain so, since we need to either stretch out the

Yes, more good news!! This morning I woke up because my feet were cold; they were cold and wet. There was a 15 x 18-inch puddle of soaked bedding under my ankles and feet. My left ankle had been red for about a week, and I outlined the red area with a permanent marker to see if it shrank or got larger

Good Day all Not sure how to handle new blood sugar spikes. I am on 47.5mg prednisone now and have GCA/PMR. I will start Actemra in coming days. Lately my blood glucose spikes everyday to around 140 mg/dl, but yesterday it shot up to 180mg/dl. (I think conversion is about 10mmol/L). I have a continuous

Was first dx with pmr (2018) and given lots of prednisone. Then gca was added with infusions of actemra. The prednisone was making me feel better. Nodules in my lungs were growing and in Sept of 23, I had a bronchoscopy and granulomas showed up. So gpa was dx. Now on rituxin, still on 7mg prednisone

Good Day all, On 47.5 mg prednisone for GCA. Had flu vaccine about 4 hours ago. No side effects so far- knock on wood. I am starting Actemra IV this week- hopefully this will help taper with prednisone. Will let you know. Did not get new Covid vaccine yet, as my hubby had bad reaction for the