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Actemra
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Websites - useful stuff, articles, resources
Articles on Tocilizumab (
Actemra
) https://www.nice.org.uk/guidance/TA518 An Efficacy and Safety Study of Tocilizumab (RoActemra/
Actemra
) in Participants with Giant Cell Arteritis (GCA) https://clinicaltrials.gov/ct2/show/results/NCT01791153?
Articles on Tocilizumab (
Actemra
) https://www.nice.org.uk/guidance/TA518 An Efficacy and Safety Study of Tocilizumab (RoActemra/
Actemra
) in Participants with Giant Cell Arteritis (GCA) https://clinicaltrials.gov/ct2/show/results/NCT01791153?
Insight329
in
PMRGCAuk
6 years ago
Swollen glands
Hi Have been on roactemra for 18 months no side effects besides can't lose weight. I have swollen neck glands with 4 months and now swollen gland by collar bone.Has anyone gotten this as a side effect?thanks
Hi Have been on roactemra for 18 months no side effects besides can't lose weight. I have swollen neck glands with 4 months and now swollen gland by collar bone.Has anyone gotten this as a side effect?thanks
Trace1974
in
NRAS
6 years ago
blong
The Dr. has now put me on
Actemra
. I am only on my 2nd shot, so we will see if it works. I suffer from extreme head pressure at times, elevated
BP. I haven't been sleeping very well even with sleeping pills. And the list goes on. I am a Disable Veteran from the Vietnam era.
The Dr. has now put me on
Actemra
. I am only on my 2nd shot, so we will see if it works. I suffer from extreme head pressure at times, elevated
BP. I haven't been sleeping very well even with sleeping pills. And the list goes on. I am a Disable Veteran from the Vietnam era.
blong
in
PMRGCAuk
6 years ago
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Actemra (Tocilizumab) tummy problems
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 and have found I get bad stomach pains after injecting. Also over the Christmas period I didn't have much appetite.
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 and have found I get bad stomach pains after injecting. Also over the Christmas period I didn't have much appetite.
Hidden
in
NRAS
6 years ago
Actemra
I do have a question: Did anyone ever used
Actemra
as the one and only drug for GCA and if so, how were the results? And still I'd like to know if anyone in Canada got
Actemra
financed by Pharmacare? Thank you and I hope you have a great time with the people who are most important to you!
I do have a question: Did anyone ever used
Actemra
as the one and only drug for GCA and if so, how were the results? And still I'd like to know if anyone in Canada got
Actemra
financed by Pharmacare? Thank you and I hope you have a great time with the people who are most important to you!
Akino
in
PMRGCAuk
6 years ago
Actemra Adrenals Fatigue at 7 . 5
Some advice please I am finally down to 7.5,after 13 weeks of
Actemra
, very tired entire body hurts. Some reactions from
Actemra
are very high cholesterol and strange blood pressure readings. I have had muscle weakness for a very long time but this fatigue is not just muscles.
Some advice please I am finally down to 7.5,after 13 weeks of
Actemra
, very tired entire body hurts. Some reactions from
Actemra
are very high cholesterol and strange blood pressure readings. I have had muscle weakness for a very long time but this fatigue is not just muscles.
Nap1
in
PMRGCAuk
6 years ago
Sharing...
token=AWx4s9yn-DXD0c87b36w9Pmw7TjXQDrRFrq6vTkdjd7MCqpyQ0H_YVtq7IYriqyYZjjaN2C7rngsjlKKpjF- On another note, I made the decision today to start
Actemra
. After 3 flares and unable to get below 20mg Pred I decided it was time.
token=AWx4s9yn-DXD0c87b36w9Pmw7TjXQDrRFrq6vTkdjd7MCqpyQ0H_YVtq7IYriqyYZjjaN2C7rngsjlKKpjF- On another note, I made the decision today to start
Actemra
. After 3 flares and unable to get below 20mg Pred I decided it was time.
PMR2011
in
PMRGCAuk
6 years ago
Monotherapy with Actemra for GCA
I injected my first
Actemra
medication on December 21 at 3.30 pm. No allergic reactions, no side effects that day. Next morning I felt so much more energy in my whole body, like every single cell got life again. It lasted half a day, I crashed in the afternoon.
I injected my first
Actemra
medication on December 21 at 3.30 pm. No allergic reactions, no side effects that day. Next morning I felt so much more energy in my whole body, like every single cell got life again. It lasted half a day, I crashed in the afternoon.
Akino
in
PMRGCAuk
6 years ago
Club zero getting closer - My Actemra story continues
I’m currently flip flopping between 3mg and 4mg of Rayos (time released Prednisone) and my weekly
Actemra
shots. The day before my shot I used to feel horrible now that has passed. I see my doctor in 3 weeks in which I should be flipping between 2mg & 3mg.
I’m currently flip flopping between 3mg and 4mg of Rayos (time released Prednisone) and my weekly
Actemra
shots. The day before my shot I used to feel horrible now that has passed. I see my doctor in 3 weeks in which I should be flipping between 2mg & 3mg.
Marie1479
in
PMRGCAuk
6 years ago
Will any medication ever help ?
I have been on Methotrexate, Enbrel, Cimzia, Leflunomide and
Actemra
. Nothing has helped. Last 2 days I can hardly walk because of the pain in my hip. RA is a nasty thing. All i want to do is cry from this pain. Not sure if we will ever find the right combination to make me feel better.
I have been on Methotrexate, Enbrel, Cimzia, Leflunomide and
Actemra
. Nothing has helped. Last 2 days I can hardly walk because of the pain in my hip. RA is a nasty thing. All i want to do is cry from this pain. Not sure if we will ever find the right combination to make me feel better.
Cin111
in
NRAS
6 years ago
Discontinue prednisone at 9 mgs.
I am on
Actemra
. My doc said I can just stop the prednisone at 9 since my labs are fine and no head symptoms. I’m wondering if this is dangerous. The thrush is making my food taste like Vaseline and very depressing and I want to do this. Anyone that can share a story of discontinuing a early.
I am on
Actemra
. My doc said I can just stop the prednisone at 9 since my labs are fine and no head symptoms. I’m wondering if this is dangerous. The thrush is making my food taste like Vaseline and very depressing and I want to do this. Anyone that can share a story of discontinuing a early.
Leeleep
in
PMRGCAuk
6 years ago
Actemra shot side effect
I have had 10 shots if
Actemra
snd today I noticed a lot of tenderness in the stomach where the shots are taken. Has anyone else noticed this?
I have had 10 shots if
Actemra
snd today I noticed a lot of tenderness in the stomach where the shots are taken. Has anyone else noticed this?
Leeleep
in
PMRGCAuk
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
FORTEO for bone fractures
I never show lab results supporting my diagnoses; however the biopsy was positive for GCA and I have monthly infusions of
actemra
to prevent blindness and to allow me to get off prednisone. 7 mg now on slow taper.
I never show lab results supporting my diagnoses; however the biopsy was positive for GCA and I have monthly infusions of
actemra
to prevent blindness and to allow me to get off prednisone. 7 mg now on slow taper.
EmmaLaura
in
PMRGCAuk
6 years ago
One more tale of appreciation.....
I am now on
Actemra
fusion once a month and about to go down on preds to 9mgs from 10 mgs. Other than feeling about 95 and gaining 45 pounds having a very stiff back - that miraculously goes away and comes back again, aside from the depression, the itchy spots etc.
I am now on
Actemra
fusion once a month and about to go down on preds to 9mgs from 10 mgs. Other than feeling about 95 and gaining 45 pounds having a very stiff back - that miraculously goes away and comes back again, aside from the depression, the itchy spots etc.
Alfryd
in
PMRGCAuk
6 years ago
Actemra
Hi there to you all from Milo in sydney, I may have the opportunity next year of going on
Actemra
, is anyone currently on this biologic and may I ask how it is going for you?
Hi there to you all from Milo in sydney, I may have the opportunity next year of going on
Actemra
, is anyone currently on this biologic and may I ask how it is going for you?
Milo247
in
NRAS
6 years ago
Actemra and thrush.
The
Actemra
was added two months ago and the thrush is worse. Anyone dealing with this? I’m putting a call in today to my doc and thinking I need to stop the
Actemra
. I also have CVID and have not gone for my gammagobulin iv that keeps my numbers up.
The
Actemra
was added two months ago and the thrush is worse. Anyone dealing with this? I’m putting a call in today to my doc and thinking I need to stop the
Actemra
. I also have CVID and have not gone for my gammagobulin iv that keeps my numbers up.
Leeleep
in
PMRGCAuk
6 years ago
Just checking in and saying hello 😊
After my reaction to
Actemra
I went off everything except prednisone and I am happy to report I’m still doing really well. I’m down to 10 on the prednisone which is the lowest I’ve been in quite sometime.
After my reaction to
Actemra
I went off everything except prednisone and I am happy to report I’m still doing really well. I’m down to 10 on the prednisone which is the lowest I’ve been in quite sometime.
Nitrobunny
in
PMRGCAuk
6 years ago
Travel advice
Hi guys any good products to keep my
actemra
cool while traveling? Also do I need Doctors letter for airports etc ? Any advice is greatly appreciated Peter
Hi guys any good products to keep my
actemra
cool while traveling? Also do I need Doctors letter for airports etc ? Any advice is greatly appreciated Peter
Pedz
in
NRAS
6 years ago
Tocilizumab is not approved by NHS England for GCA on cost grounds
Tocilizumab (TCZ), or
Actemra
, which has been approved for GCA in the US and Canada, is a relatively new 'biologic' drug, which directly targets IL-6, one of the key 'interleukins' that is a major player in the development of giant cells and the inflammation of the artery linings.
Tocilizumab (TCZ), or
Actemra
, which has been approved for GCA in the US and Canada, is a relatively new 'biologic' drug, which directly targets IL-6, one of the key 'interleukins' that is a major player in the development of giant cells and the inflammation of the artery linings.
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
6 years ago
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