Search
Search
About
Log in
Join
Experiences with
Tocilizumab
Posts
Communities
696 public posts
Filter results
New poll live - for people with GCA
On Tuesday we have the second NICE meeting to consider
tocilizumab
for GCA. It would help us to have one or two statistics ready in case we need them. One is to have an idea of how long people are struggling with GCA, how long it takes them to get off steroids.
On Tuesday we have the second NICE meeting to consider
tocilizumab
for GCA. It would help us to have one or two statistics ready in case we need them. One is to have an idea of how long people are struggling with GCA, how long it takes them to get off steroids.
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
6 years ago
Paid market research opportunity in London
Patients are invited who have been diagnosed with Rheumatoid Arthritis and who are taking methotrexate and a biologic adalimumab (Humira®), etanercept (Enbrel®, Benepali®and Erelzi®), certolizumab (Cimzia®), abatacept (Orencia®),
tocilizumab
(RoActemra®).
Patients are invited who have been diagnosed with Rheumatoid Arthritis and who are taking methotrexate and a biologic adalimumab (Humira®), etanercept (Enbrel®, Benepali®and Erelzi®), certolizumab (Cimzia®), abatacept (Orencia®),
tocilizumab
(RoActemra®).
Clare-NRAS
NRAS
in
NRAS
6 years ago
Not so NICE for GCA? - Fantastic response from patients!
Just a month ago (18 December) we posted about the decision of NICE not to approve
Tocilizumab
(actemra) for GCA. The next stage will be on Tuesday, when NICE will consider the submissions from consultation.
Just a month ago (18 December) we posted about the decision of NICE not to approve
Tocilizumab
(actemra) for GCA. The next stage will be on Tuesday, when NICE will consider the submissions from consultation.
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
6 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
GCA and steroid withdrawal
I am now taking
Tocilizumab
by injection and have made an amazing recovery having been so very ill for over 18 months. Now I am down to 5 1/2 mg of Pred and have begun to have really bad pain at night.
I am now taking
Tocilizumab
by injection and have made an amazing recovery having been so very ill for over 18 months. Now I am down to 5 1/2 mg of Pred and have begun to have really bad pain at night.
christine2715
in
PMRGCAuk
6 years ago
Rheumatoid Arthritis -
I have monthly infusions of
tocilizumab
(Actemra) I was diagnosed in 2010 got up one morning and my fingers were locked and I went down hill from then. July 2017 I had my left hip totally replaced and will be having my right hip done in January.
I have monthly infusions of
tocilizumab
(Actemra) I was diagnosed in 2010 got up one morning and my fingers were locked and I went down hill from then. July 2017 I had my left hip totally replaced and will be having my right hip done in January.
maggie230803
in
NRAS
6 years ago
5 weeks off tocilizumab
Don’t know if this is a good thing or not but I stopped talking my toci 5 weeks ago because I felt unwell but I liked the feeling of “normal’ while I haven’t got that drug in my system I know a full blown flare could be just around the corner so do I start again? As I mentioned I haven’t felt completely
Don’t know if this is a good thing or not but I stopped talking my toci 5 weeks ago because I felt unwell but I liked the feeling of “normal’ while I haven’t got that drug in my system I know a full blown flare could be just around the corner so do I start again? As I mentioned I haven’t felt completely
Pedz
in
NRAS
6 years ago
NICE consultation on new drug for GCA - we only have till 4 January!
You may have read that NICE, the National Institute for Health and Clinical Excellence has so far refused to approve the use of
tocilizumab
for GCA. We feel that there are flaws in their arguments, and have sent our comments to them via the consultation website.
You may have read that NICE, the National Institute for Health and Clinical Excellence has so far refused to approve the use of
tocilizumab
for GCA. We feel that there are flaws in their arguments, and have sent our comments to them via the consultation website.
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
7 years ago
More and more testing :-(
I am only on
Tocilizumab
. All the autoimmune tests came back as negative. So I guess now will be a viral specialist. Still not sure after 3 years why I lost 52# of muscles mass in 7 weeks and all the cartilage in my knees has mostly dissolved.
I am only on
Tocilizumab
. All the autoimmune tests came back as negative. So I guess now will be a viral specialist. Still not sure after 3 years why I lost 52# of muscles mass in 7 weeks and all the cartilage in my knees has mostly dissolved.
dwsurquhart
in
NRAS
7 years ago
Baricitinib (Olumiant) Dairy
I had stopped
Tocilizumab
(TCB) at the end of September. I started to flare at the beginning of November, when TCB was out of my system. I started Baricitinib on 14th December. Please note this was the worst, most aggressive flare I’ve had in 4 years.
I had stopped
Tocilizumab
(TCB) at the end of September. I started to flare at the beginning of November, when TCB was out of my system. I started Baricitinib on 14th December. Please note this was the worst, most aggressive flare I’ve had in 4 years.
bernese1225
in
NRAS
7 years ago
Monotherapy with Actemra for GCA
I received all kinds of vaccinations- tetanus, flu, pneumonia and shingles- before injection the first
Tocilizumab
syringe on December 21. It costs us Can$940 for four syringes= two month treatment as Pharmacare denied cost coverage and my private insurance covers only Can$300 per month.
I received all kinds of vaccinations- tetanus, flu, pneumonia and shingles- before injection the first
Tocilizumab
syringe on December 21. It costs us Can$940 for four syringes= two month treatment as Pharmacare denied cost coverage and my private insurance covers only Can$300 per month.
Akino
in
PMRGCAuk
7 years ago
Actemra (Tocilizumab) tummy problems
Happy new year all. I hope you had a lovely Christmas. I must admit that I found making the Christmas dinner hard work this year and was very grateful for my perching stool. My question is for those who are taking Actemra...I don't think there are many of us here. I started this a couple of months ago
Happy new year all. I hope you had a lovely Christmas. I must admit that I found making the Christmas dinner hard work this year and was very grateful for my perching stool. My question is for those who are taking Actemra...I don't think there are many of us here. I started this a couple of months ago
Hidden
in
NRAS
6 years ago
Tocilizumab is not approved by NHS England for GCA on cost grounds
I am very sorry to have to share the news that NICE, the National Institute for Health and Clinical Excellence, has rejected approval of
tocilizumab
for GCA. Their decision is open to consultation, and we would like as many GCA patients as possible to comment on their website about this decision.
I am very sorry to have to share the news that NICE, the National Institute for Health and Clinical Excellence, has rejected approval of
tocilizumab
for GCA. Their decision is open to consultation, and we would like as many GCA patients as possible to comment on their website about this decision.
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
7 years ago
Farewell Tocilizumab...hello Baricitinib
I was dagnosed with RD 3.5yrs ago, been on Enbrel, Rituximab and
Tocilizumab
. My last infusion was 4 weeks ago... Today I start new treatment. Baricitinib which is a JAK inhibitor. No more infusions. I take one tablet a day along with my weekly 20mg of MTX.
I was dagnosed with RD 3.5yrs ago, been on Enbrel, Rituximab and
Tocilizumab
. My last infusion was 4 weeks ago... Today I start new treatment. Baricitinib which is a JAK inhibitor. No more infusions. I take one tablet a day along with my weekly 20mg of MTX.
Chezis21
in
NRAS
7 years ago
2017 sees several new drugs for rheumatic illnesses - including GCA
2017 has been a good year for new drugs for inflammatory rheumatoid conditions, and at last
tocilizumab
has been approved by the FDA in the US for Giant Cell Arteritis. Let's hope that before long it's approved by NICE for the UK too! http://bit.ly/2z94Pxi
2017 has been a good year for new drugs for inflammatory rheumatoid conditions, and at last
tocilizumab
has been approved by the FDA in the US for Giant Cell Arteritis. Let's hope that before long it's approved by NICE for the UK too! http://bit.ly/2z94Pxi
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
7 years ago
Oysters
Hi guys daft question hi am on
Tocilizumab
Ive got a thing coming up and oysters are on the menu just wondered if I'm ok to eat them ?
Hi guys daft question hi am on
Tocilizumab
Ive got a thing coming up and oysters are on the menu just wondered if I'm ok to eat them ?
Pedz
in
NRAS
7 years ago
Tocilizumab Injections
Hi guys I'm intending to give Roche Pharmaceuticals feedback on the delivery syringe of the Toc injections but wanted to ask if you have the same issues. I have been on the injections for 2 years now and doing well on the drug. However whoever designed the syringe clearly has no knowledge of RD. As the
Hi guys I'm intending to give Roche Pharmaceuticals feedback on the delivery syringe of the Toc injections but wanted to ask if you have the same issues. I have been on the injections for 2 years now and doing well on the drug. However whoever designed the syringe clearly has no knowledge of RD. As the
shazbat
in
NRAS
7 years ago
New drug
Please could you tell me is
tocilizumab
drug available.I read about it in the paper.Thank you.
Please could you tell me is
tocilizumab
drug available.I read about it in the paper.Thank you.
Meg333
in
PMRGCAuk
7 years ago
GCA - Tocilizumab - NICE
If you have had any experience of being treated with
Tocilizumab
for GCA/TA - favourable or unfavourable then please can you contact me, John Mills ASAP John.mills@vasculitis.org.uk - the NICE assessment committee meets next week and I would like some anecdotal evidence to present at the meeting.
If you have had any experience of being treated with
Tocilizumab
for GCA/TA - favourable or unfavourable then please can you contact me, John Mills ASAP John.mills@vasculitis.org.uk - the NICE assessment committee meets next week and I would like some anecdotal evidence to present at the meeting.
John_Mills
in
PMRGCAuk
7 years ago
Giant Cell Arteritis - Tocilizumab - NICE
If you have had any experience of being treated with
Tocilizumab
for GCA/TA - favourable or unfavourable then please can you contact, me, John Mills ASAP John.mills@vasculitis.org.uk - the NICE assessment committee meets next week and I would like some anecdotal evidence to present at the meeting.
If you have had any experience of being treated with
Tocilizumab
for GCA/TA - favourable or unfavourable then please can you contact, me, John Mills ASAP John.mills@vasculitis.org.uk - the NICE assessment committee meets next week and I would like some anecdotal evidence to present at the meeting.
John_Mills
Vasculitis UK
in
Vasculitis UK
7 years ago
Tocilizumab
Does anyone know if
Tocilizumab
injections sting? I remember when I first started Humira it used to sting like crazy.
Does anyone know if
Tocilizumab
injections sting? I remember when I first started Humira it used to sting like crazy.
Kayleigh0708
in
NRAS
7 years ago
1
...
25
26
27
...
35
Next page
10
20
30
Filter results
Clear filters
Posted in
All communities
NRAS
336 results
PMRGCAuk
290 results
Vasculitis UK
20 results
View top 10 communities
Sort by
Most Relevant
Newest