Search
Search
About
Log in
Join
Experiences with
Tocilizumab
Posts
Communities
691 public posts
Filter results
Painful feet, back, thighs
I started on 60mg prednisolone and have now reduced to 7mg/6mg with the help of
Tocilizumab
/Actemra injections for one year, now stopped, and methotrexate 10mg per week, which I am still on. I have had one relaps last summer but have been ok since, apart from the usual side- effects.
I started on 60mg prednisolone and have now reduced to 7mg/6mg with the help of
Tocilizumab
/Actemra injections for one year, now stopped, and methotrexate 10mg per week, which I am still on. I have had one relaps last summer but have been ok since, apart from the usual side- effects.
Antschi
in
PMRGCAuk
10 months ago
Tocilizumab - end of the year's treatment
I just thought I'd pass this on - I saw my consultant last week, just as I was coming to the end of my year's TCZ. (Exactly three years since I contracted GCA, now on 3 mgs Pred. ) The conversation as to whether there'd be an extension was quick: the answer was no, she said there was no point in even
I just thought I'd pass this on - I saw my consultant last week, just as I was coming to the end of my year's TCZ. (Exactly three years since I contracted GCA, now on 3 mgs Pred. ) The conversation as to whether there'd be an extension was quick: the answer was no, she said there was no point in even
Frewen1
in
PMRGCAuk
10 months ago
Chickenpox and immune suppressed
I take predisilone and
Tocilizumab
for GCA although Pred. now down to 3mg. So I am due to look after my 2 year old Grandson tomorrow for my daughters birthday treat to Thorpe Park and it looks like he has chicken pox.
I take predisilone and
Tocilizumab
for GCA although Pred. now down to 3mg. So I am due to look after my 2 year old Grandson tomorrow for my daughters birthday treat to Thorpe Park and it looks like he has chicken pox.
christine2715
in
PMRGCAuk
11 months ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Appointment update
He doesn’t believe it well do much for my PMR, however, he gave me a leaflet for
Tocilizumab
…. Interesting!
He doesn’t believe it well do much for my PMR, however, he gave me a leaflet for
Tocilizumab
…. Interesting!
Bramble2000
in
PMRGCAuk
11 months ago
RoActemra
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
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
Niblick
in
PMRGCAuk
4 months ago
Bunions! 🦶🏻🦶🏻
My worry is that my
Tocilizumab
might stop working if I have a break, as one of my other meds did when I had to have a break from it. I have been told that
Tocilizumab
is my last biologic as I have had 6!!
My worry is that my
Tocilizumab
might stop working if I have a break, as one of my other meds did when I had to have a break from it. I have been told that
Tocilizumab
is my last biologic as I have had 6!!
Moomin8
in
NRAS
1 year ago
Totally desperate and abandoned (sorry- this is a long rant)
I know I am one of the lucky ones to have been given
Tocilizumab
in the first place, BUT it is totally reprehensible, and discriminatory (this condition after all, mainly affects elderly ladies).
I know I am one of the lucky ones to have been given
Tocilizumab
in the first place, BUT it is totally reprehensible, and discriminatory (this condition after all, mainly affects elderly ladies).
Suzita76
in
PMRGCAuk
10 months ago
Stopped Tocilizumab, CRP rising, is it a GCA flare?
I'm hoping to find someone else who had GCA, has stopped taking steroids and stopped
Tocilizumab
(Actemra), to know how their journey went from then on without treatment. I was diagnosed with GCA over 3 years ago.
I'm hoping to find someone else who had GCA, has stopped taking steroids and stopped
Tocilizumab
(Actemra), to know how their journey went from then on without treatment. I was diagnosed with GCA over 3 years ago.
Frenchduck
in
PMRGCAuk
10 months ago
Taking Actemra (Tocilizumab) syringes abroad
I have GCA and PMR and am currently on Actemera (
Tocilizumab
) . Planning to go to Australia at Easter and will need to take 6 syringes and keep them cool in transit for say 24 hours. Can anyone recommend a temperature controlled carrier case?
I have GCA and PMR and am currently on Actemera (
Tocilizumab
) . Planning to go to Australia at Easter and will need to take 6 syringes and keep them cool in transit for say 24 hours. Can anyone recommend a temperature controlled carrier case?
Niblick
in
PMRGCAuk
5 months ago
Tocilizumab
Has anyone had
Tocilizumab
injections for pmr? I've been looking at recent research which seems to suggest favourable outcomes for pmr sufferers who have problems tapering prednisolone.
Has anyone had
Tocilizumab
injections for pmr? I've been looking at recent research which seems to suggest favourable outcomes for pmr sufferers who have problems tapering prednisolone.
BlueMozart
in
PMRGCAuk
1 year ago
Herpes Zoster vaccination OK for me?
I'm about to start
Tocilizumab
injections for GCA. I've been on high doses of steroids since February (60mg). Now down to 17.5 mg. I've been recommended by the health board to have the Herpes Zoster vaccination prior to starting the biologic jabs.
I'm about to start
Tocilizumab
injections for GCA. I've been on high doses of steroids since February (60mg). Now down to 17.5 mg. I've been recommended by the health board to have the Herpes Zoster vaccination prior to starting the biologic jabs.
AliDeJ
in
PMRGCAuk
1 year ago
What a year so far
Oh yes and next week go to Wrightington as left elbow due to be replaced and will be asking for a date as need to go back on meds, looks like it's going to be subcut
Tocilizumab
and have to wait until procedure is done.
Oh yes and next week go to Wrightington as left elbow due to be replaced and will be asking for a date as need to go back on meds, looks like it's going to be subcut
Tocilizumab
and have to wait until procedure is done.
Ginger46
in
NRAS
11 months ago
Leflunomide or Tocilizumab
Will there be a benefit in swapping leflunomide for
Tocilizumab
? Any advice very welcome. A discussion with the rheumatologist indicated that she was not a fan of Health unlocked and that I should follow her instructions to the letter!
Will there be a benefit in swapping leflunomide for
Tocilizumab
? Any advice very welcome. A discussion with the rheumatologist indicated that she was not a fan of Health unlocked and that I should follow her instructions to the letter!
Talyfan
in
PMRGCAuk
1 year ago
Tocilizumab + Hydroxychloroquine
Hi, I had a lovely telephone consultation with Rheumy consultant yesterday. Due to minor flares in joints but also with Sjogrens, it has been suggested I add Hydroxy to meds. Just wondering if anybody is taking this combination and how they find it? The Rheumy asked if I would like a follow up appointment
Hi, I had a lovely telephone consultation with Rheumy consultant yesterday. Due to minor flares in joints but also with Sjogrens, it has been suggested I add Hydroxy to meds. Just wondering if anybody is taking this combination and how they find it? The Rheumy asked if I would like a follow up appointment
Brushwork
in
NRAS
1 year ago
The future of GCA treatment ?
I imagine this might already have been posted, but if not……… https://www.healio.com/news/rheumatology/20231018/bubbling-with-new-ideas-
tocilizumab
-steroids-and-the-future-of-gca-treatment?utm_source=selligent&utm_medium=email&utm_campaign=news
I imagine this might already have been posted, but if not……… https://www.healio.com/news/rheumatology/20231018/bubbling-with-new-ideas-
tocilizumab
-steroids-and-the-future-of-gca-treatment?utm_source=selligent&utm_medium=email&utm_campaign=news
Suzita76
in
PMRGCAuk
7 months ago
Flare confirmed with PET scan
About a month ago I reported that I had stopped
Tocilizumab
and I was waiting to see if the GCA had gone into remission. I had no GCA symptoms and no eye problems confirmed by the ophthalmologist.
About a month ago I reported that I had stopped
Tocilizumab
and I was waiting to see if the GCA had gone into remission. I had no GCA symptoms and no eye problems confirmed by the ophthalmologist.
Frenchduck
in
PMRGCAuk
9 months ago
Tocilizumab
How do I know if my toclizumab isn't working any more. ? I've had a terrible flare up now going into it's 4 week my gp gave me a steriod injection 3 weeks ago it hasn't helped much... my worry is has toclizumab stopped working all together how do I know? How long do I wait before I know if its stopped
How do I know if my toclizumab isn't working any more. ? I've had a terrible flare up now going into it's 4 week my gp gave me a steriod injection 3 weeks ago it hasn't helped much... my worry is has toclizumab stopped working all together how do I know? How long do I wait before I know if its stopped
Vonnie10
in
NRAS
1 year ago
GCA Hair Loss & Skin Changes
Diagnosed with GCA ( Right Temporal artery biopsy) & placed on 50mg Prednisone daily & 10mg AMLO daily Dec 2022 commenced weekly injections of 162mg
Tocilizumab
(Actemra) & still having the injection as I write Dec 2022 commenced tapering of Prednisone as directed & last dose was taken April 2023
Diagnosed with GCA ( Right Temporal artery biopsy) & placed on 50mg Prednisone daily & 10mg AMLO daily Dec 2022 commenced weekly injections of 162mg
Tocilizumab
(Actemra) & still having the injection as I write Dec 2022 commenced tapering of Prednisone as directed & last dose was taken April 2023
driveway77
in
PMRGCAuk
1 year ago
rheumatoid arthritis
I’m on (
tocilizumab
) and Methotrexate injections once a week plus 10 mg steroids . I’ve had lots of falls because of my knee giving way. I’m trying to build up my muscles but finding this difficult because I’ve got a tear in shoulder from previous fall.
I’m on (
tocilizumab
) and Methotrexate injections once a week plus 10 mg steroids . I’ve had lots of falls because of my knee giving way. I’m trying to build up my muscles but finding this difficult because I’ve got a tear in shoulder from previous fall.
linnypin1
in
NRAS
5 months ago
Coopersmummy7
eye.Long story short,2 relapses,yo yo ing of f prednisilone,could not tolerate Metho, or leflunomide,and now looks like I will be starting on Tocilzumab.Am currently weaning quite quickly off pred because of eye pressure.Down to 7 mg,and every2 weeks drop another mg.Does anybody have any input on
Tocilizumab
eye.Long story short,2 relapses,yo yo ing of f prednisilone,could not tolerate Metho, or leflunomide,and now looks like I will be starting on Tocilzumab.Am currently weaning quite quickly off pred because of eye pressure.Down to 7 mg,and every2 weeks drop another mg.Does anybody have any input on
Tocilizumab
Angelsmummy
in
PMRGCAuk
1 month ago
1
...
3
4
5
...
35
Next page
10
20
30
Filter results
Clear filters
Posted in
All communities
NRAS
335 results
PMRGCAuk
286 results
Vasculitis UK
20 results
View top 10 communities
Sort by
Most Relevant
Newest