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Experiences with
Tocilizumab
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Changing to tocilizumab
It didn't work after more than three months so now I'm going to be changing to the unpronounceable
tocilizumab
. Anyone had good results with this?
It didn't work after more than three months so now I'm going to be changing to the unpronounceable
tocilizumab
. Anyone had good results with this?
attatel
in
NRAS
5 years ago
Jak - kinase inhibitor
I've been given two options to think about -
Tocilizumab
(injection or infusion) and Jak - Kinase Inhibitors (pills). Can anybody who has experience with either drug please let me know how you get on with them?
I've been given two options to think about -
Tocilizumab
(injection or infusion) and Jak - Kinase Inhibitors (pills). Can anybody who has experience with either drug please let me know how you get on with them?
Savannahseger
in
NRAS
5 years ago
Update on tocilizumab not working.
Hi there, I recently posted that I had been on weekly injections of
tocilizumab
but had got no relief after many weeks. After 12 weeks when I was still in a lot of pain and had noticed absolutely no improvement, my rheumatologist changed me to monthly infusions.
Hi there, I recently posted that I had been on weekly injections of
tocilizumab
but had got no relief after many weeks. After 12 weeks when I was still in a lot of pain and had noticed absolutely no improvement, my rheumatologist changed me to monthly infusions.
Sassifrass
in
NRAS
5 years ago
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stop/start MTX problems?
First because although it's not so crucial to drug longevity with
tocilizumab
, which I am now on, it still may help to keep the biologic working longer. This wasn't quantified so it seemed quite vague although fair enough.
First because although it's not so crucial to drug longevity with
tocilizumab
, which I am now on, it still may help to keep the biologic working longer. This wasn't quantified so it seemed quite vague although fair enough.
roseyx
in
NRAS
5 years ago
Biologics and Lung Disease
Shortly after starting Actemra (
tocilizumab
) I noticed shortness of breath. I was told that I had genetic COPD but I have since read articles that Biologics could be the cause
Shortly after starting Actemra (
tocilizumab
) I noticed shortness of breath. I was told that I had genetic COPD but I have since read articles that Biologics could be the cause
SufferingOnHumira
in
NRAS
5 years ago
More on Cytokine Release Syndrome toxicities associated with CAR-T-cell therapy.
.,
tocilizumab
) appear to reduce the rates of severe CRS. Jackie
.,
tocilizumab
) appear to reduce the rates of severe CRS. Jackie
Jm954
Administrator
in
CLL Support
5 years ago
Tocilizumab
Hi After relapsing with Giant Cell I have been prescribed the above.Looking at the possible side effects am a bit concerned.Anyone have any experience of this treatment?
Hi After relapsing with Giant Cell I have been prescribed the above.Looking at the possible side effects am a bit concerned.Anyone have any experience of this treatment?
Roxy47
in
PMRGCAuk
5 years ago
Tocilizumab
Been on Bengali injections for several months with prednisalone thought the biological was working as I felt really well then had to taper off the steroids and back came the joint pain and swelling trying me on the
tocilizumab
has anyone else been on this biological ?
Been on Bengali injections for several months with prednisalone thought the biological was working as I felt really well then had to taper off the steroids and back came the joint pain and swelling trying me on the
tocilizumab
has anyone else been on this biological ?
Susiequest
in
NRAS
5 years ago
Travelling with RoActemra (Tocilizumab)
Hi -does anyone have any experience with travelling with RoActemra (
Tocilizumab
) . I need to be able to keep it at 2 - 8 degrees C for approximately 8-10 hours (to airport on plane etc.) before getting somewhere with a fridge. Any ideas would be great thanks
Hi -does anyone have any experience with travelling with RoActemra (
Tocilizumab
) . I need to be able to keep it at 2 - 8 degrees C for approximately 8-10 hours (to airport on plane etc.) before getting somewhere with a fridge. Any ideas would be great thanks
TTCC
in
NRAS
5 years ago
Weight gain
Just wanted to ask if anyone has experienced an issue with weight gain on
Tocilizumab
? š§
Just wanted to ask if anyone has experienced an issue with weight gain on
Tocilizumab
? š§
Roostermum
in
NRAS
5 years ago
Can I cope?
I have GCA and PMR and the GCA is much better thanks to Actemra (
tocilizumab
) injections. I have recently reduced to one every four weeks. On the last day before the injection the right side of my scalp and temple was really sore to the touch.Luckily was gone by morning and I am fine now.
I have GCA and PMR and the GCA is much better thanks to Actemra (
tocilizumab
) injections. I have recently reduced to one every four weeks. On the last day before the injection the right side of my scalp and temple was really sore to the touch.Luckily was gone by morning and I am fine now.
christine2715
in
PMRGCAuk
5 years ago
GCA and Actemra.
Hello all, I have been on Actemra (
tocilizumab
) for GCA for 1 yr 9 months. I was on the drug trial. For me it has been marvellous and I started at one injection per week, self injecting and am just starting one every 4 weeks.
Hello all, I have been on Actemra (
tocilizumab
) for GCA for 1 yr 9 months. I was on the drug trial. For me it has been marvellous and I started at one injection per week, self injecting and am just starting one every 4 weeks.
christine2715
in
PMRGCAuk
5 years ago
Can you lower ALT enzyme?
My
tocilizumab
infusions keep pushing my ALT high. Am off for a liver scan. However, I wondered if there is anything I can do to help it lower.
My
tocilizumab
infusions keep pushing my ALT high. Am off for a liver scan. However, I wondered if there is anything I can do to help it lower.
Sheepish
in
British Liver Trust
5 years ago
Very Important information for GCA sufferers
Meanwhile, I have read rather disturbing publications about
Tocilizumab
( otherwise known as Actemra), so am undecided as to how to proceed. However, my main reason for writing this is to urge anyone diagnosed with GCA to get their major arteries checked out too. I know I am very lucky (?)
Meanwhile, I have read rather disturbing publications about
Tocilizumab
( otherwise known as Actemra), so am undecided as to how to proceed. However, my main reason for writing this is to urge anyone diagnosed with GCA to get their major arteries checked out too. I know I am very lucky (?)
Suzita76
in
PMRGCAuk
5 years ago
Tocilizumab experience?
Hi there, I have recently started weekly tocizilumab injections, but 6weeks in am not feeling any relief. I did have to miss one week due to digestive problems, so have had 5 doses so far. Can anyone who has similar treatment advise how long it took to feel any improvement? Am still in total flare
Hi there, I have recently started weekly tocizilumab injections, but 6weeks in am not feeling any relief. I did have to miss one week due to digestive problems, so have had 5 doses so far. Can anyone who has similar treatment advise how long it took to feel any improvement? Am still in total flare
Sassifrass
in
NRAS
5 years ago
Large-vessel giant cell arteritis: diagnosis, monitoring and management
Recent data suggest that biologic therapies, such as
tocilizumab
, may be effective and safe steroid-sparing options for patients with GCA. However, data specifically evaluating the management of LV-GCA are limited."
Recent data suggest that biologic therapies, such as
tocilizumab
, may be effective and safe steroid-sparing options for patients with GCA. However, data specifically evaluating the management of LV-GCA are limited."
gifford7
in
PMRGCAuk
5 years ago
Tocilizumab and demyelination
https://www.mdedge.com/clinicalneurologynews/article/105774/multiple-sclerosis/new-case-ms-possibly-related-
tocilizumab
https://www.mdedge.com/clinicalneurologynews/article/105774/multiple-sclerosis/new-case-ms-possibly-related-
tocilizumab
Gaijin
in
PMRGCAuk
5 years ago
Please read this- it might save your life!
Now waiting for the results of a test for latent TB before I can start on the
Tocilizumab
, but that should be in the next couple of weeks. Iāve gone on long enough, especially as we are all trying to be positive and think about the festive season but......
Now waiting for the results of a test for latent TB before I can start on the
Tocilizumab
, but that should be in the next couple of weeks. Iāve gone on long enough, especially as we are all trying to be positive and think about the festive season but......
Suzita76
in
PMRGCAuk
6 years ago
Knees, hips and feet
I have been on
tocilizumab
for 2 years now and getting a little depressed that the Dr's have not figured this out yet. I have defects on the medial condyle of both femurs which cause stiction of both knees.
I have been on
tocilizumab
for 2 years now and getting a little depressed that the Dr's have not figured this out yet. I have defects on the medial condyle of both femurs which cause stiction of both knees.
dwsurquhart
in
NRAS
6 years ago
Does anyone know anything about tocilizumab?
Hi everyone, I've been reading a bit about a new drug that has been trialled to treat GCA and hopefully PMR, called
Tocilizumab
. If it proves successful it might mean we wouldn't steroids anymore, and all those nasty side effects. Have also heard its expensive ......no surprise there.
Hi everyone, I've been reading a bit about a new drug that has been trialled to treat GCA and hopefully PMR, called
Tocilizumab
. If it proves successful it might mean we wouldn't steroids anymore, and all those nasty side effects. Have also heard its expensive ......no surprise there.
Lonsdalelass
in
PMRGCAuk
6 years ago
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