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Tocilizumab
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Has Actemra been helpful for PMR?
But she said if I got stuck, she would like to try Actemra(
tocilizumab
). Does anyone on this forum have experience with this drug? Did it work? What were the side effects? If you live in the States, did Medicare pay for it (it can be very expensive here)?
But she said if I got stuck, she would like to try Actemra(
tocilizumab
). Does anyone on this forum have experience with this drug? Did it work? What were the side effects? If you live in the States, did Medicare pay for it (it can be very expensive here)?
lew49
in
PMRGCAuk
6 years ago
Shingles and GCA
Nearly 3 weeks on and still have shingles and its now 5 weeks since I had a
Tocilizumab
injection - I am not allowed them until the shingles clears up. Feeling miserable and very tired and not sure if the tiredness is the GCA creeping back in.
Nearly 3 weeks on and still have shingles and its now 5 weeks since I had a
Tocilizumab
injection - I am not allowed them until the shingles clears up. Feeling miserable and very tired and not sure if the tiredness is the GCA creeping back in.
christine2715
in
PMRGCAuk
6 years ago
Tip of tongue red and sore
I have Large vessel GCA on prednisone and
Tocilizumab
infusions aspirin citalopram and amlodipine but have been for months and this is only for about last 6 weeks.
I have Large vessel GCA on prednisone and
Tocilizumab
infusions aspirin citalopram and amlodipine but have been for months and this is only for about last 6 weeks.
Hidden
in
PMRGCAuk
6 years ago
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GCA and shingles
I am taking
Tocilizumab
for GCA very successfully - and I now have shingles probably because my immune system is suppressed. I feel really miserable and in awful pain. Taking antivirals. Have been told to stop the Tocilixumab for 4 weeks which will make 6 weeks in all since I had an injection.
I am taking
Tocilizumab
for GCA very successfully - and I now have shingles probably because my immune system is suppressed. I feel really miserable and in awful pain. Taking antivirals. Have been told to stop the Tocilixumab for 4 weeks which will make 6 weeks in all since I had an injection.
christine2715
in
PMRGCAuk
6 years ago
Steroid sparing drugs.
I took part in an NHS survey about a year ago, which, I believed was to help fellow GCA sufferers but it turned out to be whether or not
tocilizumab
would be helpful. An hour long survey is not enough evidence to prove that a drug will work surely.
I took part in an NHS survey about a year ago, which, I believed was to help fellow GCA sufferers but it turned out to be whether or not
tocilizumab
would be helpful. An hour long survey is not enough evidence to prove that a drug will work surely.
Primarose
in
PMRGCAuk
6 years ago
Tocilizumab Injections
I’ve recently switched to
Tocilizumab
injections after 14 years on Infliximab infusions. I’ve only had four injections but have yet to see any positive results, in fact after being fairly well controlled I feel my RA is getting worse by the day.
I’ve recently switched to
Tocilizumab
injections after 14 years on Infliximab infusions. I’ve only had four injections but have yet to see any positive results, in fact after being fairly well controlled I feel my RA is getting worse by the day.
Ruby2002
in
NRAS
6 years ago
Today’s the day (again)
Tocilizumab
and Azathioprone. My body doesn’t react well to DMARD’s at all. Fingers crossed and any positivity would be welcomed. I need to have the energy for my 3 children both mentally and physically and become a ‘normal’ person that can participate in life! Sarah xx
Tocilizumab
and Azathioprone. My body doesn’t react well to DMARD’s at all. Fingers crossed and any positivity would be welcomed. I need to have the energy for my 3 children both mentally and physically and become a ‘normal’ person that can participate in life! Sarah xx
sjhewitt42
in
NRAS
6 years ago
Biologics
Rheumy decided on
tocilizumab
as an alternative...anyone on this or been on it. The reading up of the drug is a bit scary. I did not have any side effects on benepali as far as I know. Lethargy plays such a big part off RD you don't know what's causing what.
Rheumy decided on
tocilizumab
as an alternative...anyone on this or been on it. The reading up of the drug is a bit scary. I did not have any side effects on benepali as far as I know. Lethargy plays such a big part off RD you don't know what's causing what.
LadyJan
in
NRAS
6 years ago
Helter Skelter of drugs
I felt very hopeful starting biologics, especial during the wonderful time when they worked but it's hard to maintain optimism for the next one she wants me to try..
Tocilizumab
. Apparently it goes for a new target. How many targets are there? This one is the IL-6 protein it says in the leaflet.
I felt very hopeful starting biologics, especial during the wonderful time when they worked but it's hard to maintain optimism for the next one she wants me to try..
Tocilizumab
. Apparently it goes for a new target. How many targets are there? This one is the IL-6 protein it says in the leaflet.
roseyx
in
NRAS
6 years ago
Tocilizumab and azathioprine?
Hi all, After seeing my rheumatologist today he has decided to ditch Abatercept and go with these two. Toc through infusion.. any advice or sharing of symptoms would be massively appreciated as ever. Thanks, Sarah xx
Hi all, After seeing my rheumatologist today he has decided to ditch Abatercept and go with these two. Toc through infusion.. any advice or sharing of symptoms would be massively appreciated as ever. Thanks, Sarah xx
sjhewitt42
in
NRAS
6 years ago
Question about blood numbers
I am wondering if anyone else on
tocilizumab
is having their platelet count fluctuate quite a bit. Some months my platelets are in the normal range, this month they are 60points below the low mark. And what do you do to try and bring your numbers back up? Scott
I am wondering if anyone else on
tocilizumab
is having their platelet count fluctuate quite a bit. Some months my platelets are in the normal range, this month they are 60points below the low mark. And what do you do to try and bring your numbers back up? Scott
dwsurquhart
in
NRAS
6 years ago
Tocilizumab working - but what a price
Tocilizumab
eventually started to work for me about three weeks ago - after 4 months. My blood tests bear this out; my ESR and CRP have been in the normal range for the first time in five years.
Tocilizumab
eventually started to work for me about three weeks ago - after 4 months. My blood tests bear this out; my ESR and CRP have been in the normal range for the first time in five years.
Jora
in
NRAS
6 years ago
help please ..
and creak ,restless at night hurts to turn over , feet hurt, flare after flare list goes on ,I said it to my rhem.doctor but he didn't want to know .ive just had enough of going round in circles and the pain :( ive also been diagnosed with lymphedema too. they changed my injections from benpali to to
tocilizumab
and creak ,restless at night hurts to turn over , feet hurt, flare after flare list goes on ,I said it to my rhem.doctor but he didn't want to know .ive just had enough of going round in circles and the pain :( ive also been diagnosed with lymphedema too. they changed my injections from benpali to to
tocilizumab
zozo7
in
Fibromyalgia Action UK
6 years ago
GCA and tocilizumab withdrawal
Has anyone given up taking
tocilizumab
(Actemra) and remained in remission or did you get GCA back. Is there a program to reduce injections in stages?
Has anyone given up taking
tocilizumab
(Actemra) and remained in remission or did you get GCA back. Is there a program to reduce injections in stages?
christine2715
in
PMRGCAuk
6 years ago
"9 out of 10 doctors on our payroll, recommend this product!" ~ Big Pharma : (
https://www.centerforbiosimilars.com/news/eye-on-pharma-biothera-initiates-phase-1-trial-of-potential-
tocilizumab
-biosimilar
https://www.centerforbiosimilars.com/news/eye-on-pharma-biothera-initiates-phase-1-trial-of-potential-
tocilizumab
-biosimilar
Hidden
in
PMRGCAuk
6 years ago
Baricitinib
It's a once a day tablet and this will free me of the once a month infusion of
tocilizumab
. The Toci injections didn't work for me. I do have the option of going back to infusions if it doesn't work but wondered if anyone has taken it or knows about it. Thank you in advance.
It's a once a day tablet and this will free me of the once a month infusion of
tocilizumab
. The Toci injections didn't work for me. I do have the option of going back to infusions if it doesn't work but wondered if anyone has taken it or knows about it. Thank you in advance.
Pixkeeble
in
NRAS
6 years ago
Interleukin-6 and PMR/GCA
The newer biological agents like
Tocilizumab
are monoclonal antibodies of the Immunoglobulin G1 class and it works specifically by preventing the IL-6 from binding to the tissues. References The novel interleukin-1 cytokine family members in inflammatory diseases. Hahn M1, Frey S, Hueber AJ.
The newer biological agents like
Tocilizumab
are monoclonal antibodies of the Immunoglobulin G1 class and it works specifically by preventing the IL-6 from binding to the tissues. References The novel interleukin-1 cytokine family members in inflammatory diseases. Hahn M1, Frey S, Hueber AJ.
PMRnewbie2017
in
PMRGCAuk
6 years ago
Hmmm?
"
Tocilizumab
helps patients achieve better control of this illness and fills what has been an unmet need," says Professor Dasgupta. http://www.dailymail.co.uk/health/article-5935559/New-jab-help-patients-risk-going-blind-common-condition.html <<<<< July 2018 https://www.statnews.com/2017/06/05/actemra-rheumatoid-arthritis-fda
"
Tocilizumab
helps patients achieve better control of this illness and fills what has been an unmet need," says Professor Dasgupta. http://www.dailymail.co.uk/health/article-5935559/New-jab-help-patients-risk-going-blind-common-condition.html <<<<< July 2018 https://www.statnews.com/2017/06/05/actemra-rheumatoid-arthritis-fda
Hidden
in
PMRGCAuk
6 years ago
GCA and people not understanding
I am so much better now I am on
Tocilizumab
but still not my old self. This was the first time I have been taking it fortnightly, by injection. rather than weekly and I was told I was not to do too much. I had a long day visiting a china clay experience and knew I should rest the next day.
I am so much better now I am on
Tocilizumab
but still not my old self. This was the first time I have been taking it fortnightly, by injection. rather than weekly and I was told I was not to do too much. I had a long day visiting a china clay experience and knew I should rest the next day.
christine2715
in
PMRGCAuk
6 years ago
Scoop on latest rheumi visit.
My next appointment with him will not be till the end of October, meantime, I am to have a blood test to check the level of
tocilizumab
in my blood, the sample has to be sent to Holland, where they analyze it, in order to allow doctors to fine tune the dosage.
My next appointment with him will not be till the end of October, meantime, I am to have a blood test to check the level of
tocilizumab
in my blood, the sample has to be sent to Holland, where they analyze it, in order to allow doctors to fine tune the dosage.
Gaijin
in
PMRGCAuk
6 years ago
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