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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
Calendar for Biologics
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.
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.
barbieg
in
NRAS
9 months ago
Cost of tocilizumab (2)
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
.
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
.
Duncoding
in
PMRGCAuk
5 months ago
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Tocilizumab (RoActemra) and low neutrophils?
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'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
Lolabridge
in
NRAS
2 months ago
Any advice on tapering prednisolone with Methotrexate and RoActemra?
Started Methotrexate 5 weeks ago and 3rd
RoActemra
injection tomorrow. Was told to reduce steroids from a high of 55mg at 5mg/week back in May. Am now on 20mg, reducing to 15mg on this programme at the weekend.
Started Methotrexate 5 weeks ago and 3rd
RoActemra
injection tomorrow. Was told to reduce steroids from a high of 55mg at 5mg/week back in May. Am now on 20mg, reducing to 15mg on this programme at the weekend.
tweety_pie
in
PMRGCAuk
11 months ago
Spoke too soon
After I posted, I found some chatter from four years ago addressing my concerns. It seems like I just need to wait to taper until I have better control of my symptoms. Admittedly, I am feeling pressure from my provider to reduce five mg every week or so, since I have been on Actemra. Which I am not
After I posted, I found some chatter from four years ago addressing my concerns. It seems like I just need to wait to taper until I have better control of my symptoms. Admittedly, I am feeling pressure from my provider to reduce five mg every week or so, since I have been on Actemra. Which I am not
Bummed24
in
PMRGCAuk
12 days ago
Should it take this long to taper with PMR/GCA?
I am so sorry to be needing advice again, but I am wondering if anyone else has struggled to wean from higher doses of Prednisone for PMR and GCA. Since late January I have been on dosages of 65mg. and weaned down to 45mg. by early April. Since then I can't seem to get below 45mg. as I have a return
I am so sorry to be needing advice again, but I am wondering if anyone else has struggled to wean from higher doses of Prednisone for PMR and GCA. Since late January I have been on dosages of 65mg. and weaned down to 45mg. by early April. Since then I can't seem to get below 45mg. as I have a return
Bummed24
in
PMRGCAuk
12 days ago
Antibiotic and Actemra
Hello folks, I have an infection in my tooth and need to take an antibiotic for 10 days. If I'm understanding the guidelines for Actemra correctly, apparently, I am supposed to stop my Actemra injection (which is every two weeks) while I am on an antibiotic. My question is, is that really necessary
Hello folks, I have an infection in my tooth and need to take an antibiotic for 10 days. If I'm understanding the guidelines for Actemra correctly, apparently, I am supposed to stop my Actemra injection (which is every two weeks) while I am on an antibiotic. My question is, is that really necessary
ILbbHpmr
in
PMRGCAuk
20 days ago
Generic TCZ---is it available in the UK?
My friends, Without this forum, my GCA journey would have been entirely different. You have all been there to support me, educate me, and reinforce me when I thought I was sinking. It has always made me sad that TCZ is only available to GCA patients for one year, subject to review for an additional
My friends, Without this forum, my GCA journey would have been entirely different. You have all been there to support me, educate me, and reinforce me when I thought I was sinking. It has always made me sad that TCZ is only available to GCA patients for one year, subject to review for an additional
Grammy80
in
PMRGCAuk
21 days ago
Trip to the Er/ED
A day or 2 ago, I wrote in about experiencing vertigo. I tried the Epley Maneuver on myself, and have not had any more episodes of such extreme, dramatic vertigo. However, I was left with mild dizziness, such as when one has the flu and it feels like you are swimming underwater and everything seems unsteady
A day or 2 ago, I wrote in about experiencing vertigo. I tried the Epley Maneuver on myself, and have not had any more episodes of such extreme, dramatic vertigo. However, I was left with mild dizziness, such as when one has the flu and it feels like you are swimming underwater and everything seems unsteady
Lenore58
in
PMRGCAuk
24 days ago
giant Cell
I’m off Prednisone and on Actemra only now. I inject it once a week. Lately been feeling a little light headed and woozy. My blood pressure is fine!
I’m off Prednisone and on Actemra only now. I inject it once a week. Lately been feeling a little light headed and woozy. My blood pressure is fine!
LRevell
in
PMRGCAuk
26 days ago
GCA Questions
Hi Kind Friends, My GCA hit last October, about 6 months ago, and I was put on 60 mg. Prednisone. (I’ve also been on Actemra since November.) I’m doing pretty well, but I wanted to check in regarding my tapering. I’m down to 8 mg. (from 9, about a week ago), and will have stayed there 1 month when
Hi Kind Friends, My GCA hit last October, about 6 months ago, and I was put on 60 mg. Prednisone. (I’ve also been on Actemra since November.) I’m doing pretty well, but I wanted to check in regarding my tapering. I’m down to 8 mg. (from 9, about a week ago), and will have stayed there 1 month when
Lenore58
in
PMRGCAuk
27 days ago
testing for IL6
Is it possible to test for the IL 6 factor before starting Actemra to see if Actemra will work for you?
Is it possible to test for the IL 6 factor before starting Actemra to see if Actemra will work for you?
Mstiles
in
PMRGCAuk
1 month ago
Jaw locking while tapering for GCA
I am in the process of tapering from 65 mg of Prednisone for GCA. Tonight the right side of my jaw temporarily locked while brushing my teeth. If I am honest, my scalp is becoming a bit tender again, and my tinnitus has increased a notch. I was on the high doses of Prednisone for six weeks, and began
I am in the process of tapering from 65 mg of Prednisone for GCA. Tonight the right side of my jaw temporarily locked while brushing my teeth. If I am honest, my scalp is becoming a bit tender again, and my tinnitus has increased a notch. I was on the high doses of Prednisone for six weeks, and began
Bummed24
in
PMRGCAuk
1 month ago
Confused
Hello to all, I am a 61 year old man living in Madrid (Spain). At the beginning of December 2023 I had a loss of vision in my left eye, as well as a terrible headache. I went to the hospital and was diagnosed with GCA. I was treated with high doses of corticosteroids. After fourteen days I was discharged
Hello to all, I am a 61 year old man living in Madrid (Spain). At the beginning of December 2023 I had a loss of vision in my left eye, as well as a terrible headache. I went to the hospital and was diagnosed with GCA. I was treated with high doses of corticosteroids. After fourteen days I was discharged
Azulmarino
in
PMRGCAuk
1 month ago
Tyenne /Tocilizumab
Hi just to say I be just received a letter to say I’m changing from actemra to this brand. Hopefully a lower price will make it an option for more people.
Hi just to say I be just received a letter to say I’m changing from actemra to this brand. Hopefully a lower price will make it an option for more people.
Devoid
in
PMRGCAuk
1 month ago
Can't squat or raise arms without pain?
I have tapered down to 1 mg Prednisone over three years (from 15mg). I have the same weird symptoms that I've always had. If I squat, my legs feel an extreme fatigue/deadness. I can't raise my arms for more than 15-20 seconds without them feeling an extreme fatigue/pain/deadness. Does anyone else have
I have tapered down to 1 mg Prednisone over three years (from 15mg). I have the same weird symptoms that I've always had. If I squat, my legs feel an extreme fatigue/deadness. I can't raise my arms for more than 15-20 seconds without them feeling an extreme fatigue/pain/deadness. Does anyone else have
Greytree
in
PMRGCAuk
2 months ago
Tapering Regime while on Kevzara (or other biologic)
I'm in the U.S. getting Kevzara (third injection is this Tuesday i.e. week six). I am grateful I was allowed to try Kevzara after 9 years on prednisone and never being able to get below 5 mg without a flare amongst other reasons. I have tried to look up the tapering regime for attempting a taper with
I'm in the U.S. getting Kevzara (third injection is this Tuesday i.e. week six). I am grateful I was allowed to try Kevzara after 9 years on prednisone and never being able to get below 5 mg without a flare amongst other reasons. I have tried to look up the tapering regime for attempting a taper with
artfingers
in
PMRGCAuk
2 months ago
Tapering Pred from 2mg....to 1.5 or 1mg~?
To complete the picture, I do take an injection of Actemra weekly. My GCA started in 2019 and getting this low is a first. My dosage was increased last fall due to other health issues and being off my Actemra. Since September 2023, I've gone down from 60mg per day with no issue. I've been on 2
To complete the picture, I do take an injection of Actemra weekly. My GCA started in 2019 and getting this low is a first. My dosage was increased last fall due to other health issues and being off my Actemra. Since September 2023, I've gone down from 60mg per day with no issue. I've been on 2
Grammy80
in
PMRGCAuk
2 months ago
Another Pred journey
I have been 5 years on Pred and 3 years on Actemra A bit of up’s and downs but did very well with no side effects ( except bone loss) Lately got to 3 and poof back to square one again after major flare. Up to 20 mg with a probable 2 year tapering schedule. Probably same thing will happen again below
I have been 5 years on Pred and 3 years on Actemra A bit of up’s and downs but did very well with no side effects ( except bone loss) Lately got to 3 and poof back to square one again after major flare. Up to 20 mg with a probable 2 year tapering schedule. Probably same thing will happen again below
Sunny1947
in
PMRGCAuk
2 months ago
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