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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
7 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
7 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
7 years ago
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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
7 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
7 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
7 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
7 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
7 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
7 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
7 years ago
Actemra and PMR
I’m wondering if the
Actemra
will eventually kick in to relieve PMR symptoms . Today is shot 8 or 9. I would love to hear your stories that relate to this.
I’m wondering if the
Actemra
will eventually kick in to relieve PMR symptoms . Today is shot 8 or 9. I would love to hear your stories that relate to this.
Leeleep
in
PMRGCAuk
7 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
Leveled out - My Actemra story continues
Hi everyone! As you can tell from my salutation I am feeling much better. I believe I have finally leveled out (thanks to all of you) at 6mg. I feel almost normal but do get reminders occasionally that PMR is still lurking in the background. Two weeks ago my son came home from college with Mono. He was
Hi everyone! As you can tell from my salutation I am feeling much better. I believe I have finally leveled out (thanks to all of you) at 6mg. I feel almost normal but do get reminders occasionally that PMR is still lurking in the background. Two weeks ago my son came home from college with Mono. He was
Marie1479
in
PMRGCAuk
7 years ago
Tracking, focusing issues
Down to 4m with the help of
Actemra
. First time ever I had a problem focusing or tracking the reading of a phone number. Same problem now, tonight. Almost feels similar to when you have looked for a moment at the bright sun, then have to re-focus.
Down to 4m with the help of
Actemra
. First time ever I had a problem focusing or tracking the reading of a phone number. Same problem now, tonight. Almost feels similar to when you have looked for a moment at the bright sun, then have to re-focus.
Klah
in
PMRGCAuk
7 years ago
Long overdue update on Moms Giant Cell
She has continued the
Actemra
infusions once a month and I am slow tapering her, going down 1 mg a month on the Prednisone.. I can't say enough about how much the
Actemra
has done for her in getting her away from the Prednisone. When I got her down to 5 mg.
She has continued the
Actemra
infusions once a month and I am slow tapering her, going down 1 mg a month on the Prednisone.. I can't say enough about how much the
Actemra
has done for her in getting her away from the Prednisone. When I got her down to 5 mg.
Joyismami
in
PMRGCAuk
7 years ago
Change Health Care to get Actemra?
Should I run into trouble as I taper lower, I'll have to try methotrexate for a few months before she'll try
Actemra
. She reminded me that I have a history of diverticulitis, which could be a problem with
Actemra
. I haven't had a problem in more than a decade.
Should I run into trouble as I taper lower, I'll have to try methotrexate for a few months before she'll try
Actemra
. She reminded me that I have a history of diverticulitis, which could be a problem with
Actemra
. I haven't had a problem in more than a decade.
Hindags
in
PMRGCAuk
7 years ago
Prednisone Taper
I also receive monthly infusions of
Actemra
which is supposed to reduce the need for prednisone. Each time I reduce the prednisone dose, I experience mild headaches, and minor fatigue which subside late in the 4-6 week taper period.
I also receive monthly infusions of
Actemra
which is supposed to reduce the need for prednisone. Each time I reduce the prednisone dose, I experience mild headaches, and minor fatigue which subside late in the 4-6 week taper period.
GeorgeZiser
in
PMRGCAuk
7 years ago
Actemra Use
This summer my rheumy started me on
Actemra
and took me off of the methotextrate and increased by prednisone to 10mg. I can't say that I feel much better, but for the first time in 3 1/2 years, my tests are coming back normal.
This summer my rheumy started me on
Actemra
and took me off of the methotextrate and increased by prednisone to 10mg. I can't say that I feel much better, but for the first time in 3 1/2 years, my tests are coming back normal.
dawnsgca
in
PMRGCAuk
7 years ago
Breast pain
Feels like PMS but I'm 73 and been tapering Prednisone but today took 4th shot
Actemra
. Any other ladies getting thus side effect. Taking shit weekly. Tomorrow I will be at 20 mgs prednisone for week. Been tapering 5 mgs weekly since the
Actemra
. Feeling awful uncomfortable today.
Feels like PMS but I'm 73 and been tapering Prednisone but today took 4th shot
Actemra
. Any other ladies getting thus side effect. Taking shit weekly. Tomorrow I will be at 20 mgs prednisone for week. Been tapering 5 mgs weekly since the
Actemra
. Feeling awful uncomfortable today.
Leeleep
in
PMRGCAuk
7 years ago
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