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TOC STOP research published
Recent research (V Quick et al) shows that for many GCA patients a one year course of
tocilizumab
isn't sufficient.
Recent research (V Quick et al) shows that for many GCA patients a one year course of
tocilizumab
isn't sufficient.
Fran_Benson
Partner
in
PMRGCAuk
1 month ago
Tocilizumab
Have PMRGCAuk lobbied NICE to allow NHS Doctors to prescribe a second year of
Tocilizumab
?
Have PMRGCAuk lobbied NICE to allow NHS Doctors to prescribe a second year of
Tocilizumab
?
Niblick
in
PMRGCAuk
1 month ago
medication and infection
Do I change anything, increase steroids, not take
Tocilizumab
/Methotrexate?
Do I change anything, increase steroids, not take
Tocilizumab
/Methotrexate?
Noni71
in
PMRGCAuk
22 days ago
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Tocilizumab
Can anyone using this remember how long before they felt any improvement, assuming it worked? Thank you I did my first injection on Wednesday after 3 weeks off Baracitinib and was hoping that because things were so bad, I’d notice a slight lift. I know they say usually a couple of weeks and possibly
Can anyone using this remember how long before they felt any improvement, assuming it worked? Thank you I did my first injection on Wednesday after 3 weeks off Baracitinib and was hoping that because things were so bad, I’d notice a slight lift. I know they say usually a couple of weeks and possibly
Inanotherlife
in
NRAS
2 months ago
Charity request for help: GCA patients in England
If you do not live in England, have not had
tocilizumab
, or you are still taking
tocilizumab
then please do not fill out this survey.
If you do not live in England, have not had
tocilizumab
, or you are still taking
tocilizumab
then please do not fill out this survey.
Fran_Benson
Partner
in
PMRGCAuk
3 months ago
Tocilizumab
One of my rheumatology nurses told me that there is an incidence of
Tocilizumab
causing cancerous growths. It did pop up out of nowhere and I was shocked when the dermatologist told me that it was a slow growing cancer. Has anyone heard of this link?
One of my rheumatology nurses told me that there is an incidence of
Tocilizumab
causing cancerous growths. It did pop up out of nowhere and I was shocked when the dermatologist told me that it was a slow growing cancer. Has anyone heard of this link?
Noni71
in
PMRGCAuk
4 months ago
Vasculitis/Tocilizumab
Because of my problems with prednisolone I will be having to inject myself with
tocilizumab
when it has been approved and delivered to help me to reduce the steroid more quickly. I would be interested to know of others experience on this drug.
Because of my problems with prednisolone I will be having to inject myself with
tocilizumab
when it has been approved and delivered to help me to reduce the steroid more quickly. I would be interested to know of others experience on this drug.
Daniella7
in
PMRGCAuk
4 months ago
PMR flare
Hi all I have PMR and GCA which up until now have been under control, I’m on Methotrexate and
Tocilizumab
and currently 1mg Prednisolone, but I’m having joint pain at the moment in mainly one shoulder and my knees ( not had any issues with Knees before). Would this be the start of a PMR flare?
Hi all I have PMR and GCA which up until now have been under control, I’m on Methotrexate and
Tocilizumab
and currently 1mg Prednisolone, but I’m having joint pain at the moment in mainly one shoulder and my knees ( not had any issues with Knees before). Would this be the start of a PMR flare?
Graciejack4
in
PMRGCAuk
2 months ago
Starting Tocilizumab
Hello, mighty warriors 😃 Looking for anyone with experience of
Tocilizumab
(Actemra) infusions ….I’m due to start in a week, just read all the possible side effects ( as you do when starting new drug ) and so looking for people with experience of it good or bad , so I can be bit more prepared 😅 Thank
Hello, mighty warriors 😃 Looking for anyone with experience of
Tocilizumab
(Actemra) infusions ….I’m due to start in a week, just read all the possible side effects ( as you do when starting new drug ) and so looking for people with experience of it good or bad , so I can be bit more prepared 😅 Thank
Sunshine-star5
in
NRAS
4 months ago
Timing of flu vaccine when on weekly Tocilizumab
It's too early in the reintroduction of the treatment to miss one of the
Tocilizumab
injections. Is there anyone else in the same situation as me? Advice much appreciated.
It's too early in the reintroduction of the treatment to miss one of the
Tocilizumab
injections. Is there anyone else in the same situation as me? Advice much appreciated.
Frenchduck
in
PMRGCAuk
4 months ago
Tooth extraction and tocilizumab
Hi I am going to have to have a tooth extraction....dentist says chance of jaw necrosis from
tocilizumab
and I wonder if anyone has had this ....I know from here that it is only a small chance but its scary ! Also will I need to come off medications (
tocilizumab
and methotrexate) first?
Hi I am going to have to have a tooth extraction....dentist says chance of jaw necrosis from
tocilizumab
and I wonder if anyone has had this ....I know from here that it is only a small chance but its scary ! Also will I need to come off medications (
tocilizumab
and methotrexate) first?
WaltzG
in
PMRGCAuk
6 months ago
Neutrphils
Since being on
Tocilizumab
, my levels have dropped from around 5 to 1.85. I have read on here that has happened to others. I’m hoping I don’t get taken off it before it’s started to work, that’s all. Best wishe
Since being on
Tocilizumab
, my levels have dropped from around 5 to 1.85. I have read on here that has happened to others. I’m hoping I don’t get taken off it before it’s started to work, that’s all. Best wishe
Inanotherlife
in
NRAS
1 month ago
Cost of tocilizumab (2)
Thank you to everyone who responded to my first post a couple of months ago, regarding an extension to TCZ. An update for you….. 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
Thank you to everyone who responded to my first post a couple of months ago, regarding an extension to TCZ. An update for you….. 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
Duncoding
in
PMRGCAuk
3 months ago
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
1 day ago
Cost of tocilizumab
My NHS entitlement to TCZ will expire soon. Has anyone tried to 'go private' and pay for it?
My NHS entitlement to TCZ will expire soon. Has anyone tried to 'go private' and pay for it?
Duncoding
in
PMRGCAuk
4 months ago
dizziness and weaknesd
I’m currently having a weekly injection of
tocilizumab
and 10mg steroids. My PMR feels under control but I’m feeling intense dizziness with any activity and a weakness especially noticeable in my arms, something I never felt before. Is this just part of the recovery after being so unwell ?
I’m currently having a weekly injection of
tocilizumab
and 10mg steroids. My PMR feels under control but I’m feeling intense dizziness with any activity and a weakness especially noticeable in my arms, something I never felt before. Is this just part of the recovery after being so unwell ?
Rainb84
in
PMRGCAuk
13 days ago
Mumps contact 😷
I have RA and my main meds are
Tocilizumab
(injection), Methotrexate (injection) and Sulphasalazine. Do I have to be particularly careful that I do not come in contact with a child who possibly has mumps? I know Chicken Pox is a concern, but can't find anything about mumps.
I have RA and my main meds are
Tocilizumab
(injection), Methotrexate (injection) and Sulphasalazine. Do I have to be particularly careful that I do not come in contact with a child who possibly has mumps? I know Chicken Pox is a concern, but can't find anything about mumps.
Moomin8
in
NRAS
3 months ago
"Scientists achieve breakthrough in treating 'neglected' polymyalgia rheumatica" - that's the headline but don't get too excited ...
However - it is still a monoclonal antibody, a biologic, which does the same as
tocilizumab
/Actemra, and I imagine that means it is still pretty pricey.
However - it is still a monoclonal antibody, a biologic, which does the same as
tocilizumab
/Actemra, and I imagine that means it is still pretty pricey.
PMRpro
Ambassador
in
PMRGCAuk
5 months ago
Dizziness
RA reasonably controlled with
Tocilizumab
, Sjogrens better with Hydroxychloroquine. Any thoughts welcome
RA reasonably controlled with
Tocilizumab
, Sjogrens better with Hydroxychloroquine. Any thoughts welcome
Brushwork
in
NRAS
3 months ago
Tapering
I am also on 7.5mg of Methotrexate and a monthly
Tocilizumab
shot (only until June). Thanks.
I am also on 7.5mg of Methotrexate and a monthly
Tocilizumab
shot (only until June). Thanks.
Noni71
in
PMRGCAuk
13 days ago
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