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Experiences with
Tocilizumab
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Vasculitus, a promising road ahead- let’s hope so!
After the seminal GiACTA trial,
tocilizumab
is now recommended as a first-line therapy for giant cell arteritis in combination with a glucocorticoid taper.’ (Worth reading the embedded links.) There’s a difference between
Tocilizumab
being recommended and actually being prescribed.
After the seminal GiACTA trial,
tocilizumab
is now recommended as a first-line therapy for giant cell arteritis in combination with a glucocorticoid taper.’ (Worth reading the embedded links.) There’s a difference between
Tocilizumab
being recommended and actually being prescribed.
Exflex
in
PMRGCAuk
2 months ago
Switching biologics.
I am switching from
Tocilizumab
to Anatacept. Has anyone got much experience with abatacept please?
I am switching from
Tocilizumab
to Anatacept. Has anyone got much experience with abatacept please?
Hiphopsix
in
NRAS
1 month ago
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
4 months ago
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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
3 months 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
4 months 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
2 months ago
Results of our GCA and Tocilizumab Survey Published
The results clearly illustrate the unmet need for better treatment options for English patients who stop
tocilizumab
and then have a GCA relapse. Importantly, it brings to life the results found in TOC STOP where up to half of people with GCA had a relapse after they stopped
tocilizumab
.
The results clearly illustrate the unmet need for better treatment options for English patients who stop
tocilizumab
and then have a GCA relapse. Importantly, it brings to life the results found in TOC STOP where up to half of people with GCA had a relapse after they stopped
tocilizumab
.
Fran_Benson
Partner
in
PMRGCAuk
17 days ago
Tocilizumab and heartburn
I’m finally back on
Tocilizumab
after an ankle replacement, 2 bouts of C-diff, a chest infection and minor surgery for an ingrowing toenail. It’s been a bad 3 months and my RA has been flaring the whole time with little I could take other than paracetamol.
I’m finally back on
Tocilizumab
after an ankle replacement, 2 bouts of C-diff, a chest infection and minor surgery for an ingrowing toenail. It’s been a bad 3 months and my RA has been flaring the whole time with little I could take other than paracetamol.
Inanotherlife
in
NRAS
4 days ago
Qualifying for Tocilizumab
So three questions: Has everyone else needed this evidence to get
tocilizumab
? And Is the tapering at the correct level? And Why do doctors not agree on tapering rate Thank goodness for this site.
So three questions: Has everyone else needed this evidence to get
tocilizumab
? And Is the tapering at the correct level? And Why do doctors not agree on tapering rate Thank goodness for this site.
Golfers1
in
PMRGCAuk
9 days ago
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
5 months ago
Abatacept shortage
I posted a couple of weeks ago that I was going to start Abatacept as the
Tocilizumab
didn’t work 🙄. My consultant has contacted me to say there is a national shortage so I’m to start JAK inhibitor tablets instead. Has anyone had good results with these please? 🙏🏻
I posted a couple of weeks ago that I was going to start Abatacept as the
Tocilizumab
didn’t work 🙄. My consultant has contacted me to say there is a national shortage so I’m to start JAK inhibitor tablets instead. Has anyone had good results with these please? 🙏🏻
Hiphopsix
in
NRAS
21 days 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
5 months ago
Stopping meds before operation. 😏
I have been told to stop my meds because I have to have a lumpectomy on 8th May 🙄 I had to stop my
Tocilizumab
and Sulfasalazine 4 weeks before and my Metoject 2 weeks before. I also had to stop other meds too: HRT (for good) and statin.
I have been told to stop my meds because I have to have a lumpectomy on 8th May 🙄 I had to stop my
Tocilizumab
and Sulfasalazine 4 weeks before and my Metoject 2 weeks before. I also had to stop other meds too: HRT (for good) and statin.
Moomin8
in
NRAS
2 months ago
weight loss question please
Been on prednisone since February 2023, also on
tocilizumab
injections. Currently taking 7mg prednisone. I am trying to lose some of my weight gain. I tried 1500 calories a day and lost nothing. Now doing low carb but weight not moving.
Been on prednisone since February 2023, also on
tocilizumab
injections. Currently taking 7mg prednisone. I am trying to lose some of my weight gain. I tried 1500 calories a day and lost nothing. Now doing low carb but weight not moving.
Smellydog9
in
PMRGCAuk
2 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
6 months ago
Fatigue with R&A
I'm in a pretty bad way to be honest as have been waiting for nearly 9 months to start
tocilizumab
. NHS policies or cutbacks are to blame not the nurses. Anyway today finally I'm due my first injection. Reading other posts it's likely to take 2 or 3 months to work.
I'm in a pretty bad way to be honest as have been waiting for nearly 9 months to start
tocilizumab
. NHS policies or cutbacks are to blame not the nurses. Anyway today finally I'm due my first injection. Reading other posts it's likely to take 2 or 3 months to work.
RootsToots
in
NRAS
2 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
2 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
4 months ago
Acid reflux
I use
tocilizumab
for RA and Sertraline an anti depressant ( although not depressed now, I have been on it a few years, its called a maintenance dose) I take one Lanzoprazole a day. Has any one got suggestions for treatment for this?
I use
tocilizumab
for RA and Sertraline an anti depressant ( although not depressed now, I have been on it a few years, its called a maintenance dose) I take one Lanzoprazole a day. Has any one got suggestions for treatment for this?
Mouseling
in
NRAS
23 days 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
4 months ago
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