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Actemra
Merry Christmas to all and Happy Holidays! 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
Merry Christmas to all and Happy Holidays! 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
Akino
in
PMRGCAuk
6 years ago
One more tale of appreciation.....
I don't want to add to all the thank you's and Christmas greetings - afraid people will tire of that. But I do want to tell you how much this forum means to me. Yes, I have a loving husband and family but NO ONE understands what I go thru like the polymalingerers. No one knows how to comfort and educate
I don't want to add to all the thank you's and Christmas greetings - afraid people will tire of that. But I do want to tell you how much this forum means to me. Yes, I have a loving husband and family but NO ONE understands what I go thru like the polymalingerers. No one knows how to comfort and educate
Alfryd
in
PMRGCAuk
6 years ago
Will any medication ever help ?
This is my 4th biologic (Orencia) and getting ready to start on my 3rd DMARD (Sulfasalazine). 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
This is my 4th biologic (Orencia) and getting ready to start on my 3rd DMARD (Sulfasalazine). 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
Cin111
in
NRAS
6 years ago
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Discontinue prednisone at 9 mgs.
My thrush is not getting better and now after 10 months I’m down to 9 from 60. 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
My thrush is not getting better and now after 10 months I’m down to 9 from 60. 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
Leeleep
in
PMRGCAuk
6 years ago
FORTEO for bone fractures
I’m giving myself daily injections of FORTEO since nov 06,17. Also, I have PMR/GCA. 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’m giving myself daily injections of FORTEO since nov 06,17. Also, I have PMR/GCA. 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
Just checking in and saying hello 😊
Hello all! It’s been a while since I’ve written so I thought I’d say hello and wish everyone the happiest of holidays. My beloved St. Bernard Wolfgang, passed in May of this year. A little more than a month ago we rescued Samson, pictured here waiting for his favorite blanket to come out of the
Hello all! It’s been a while since I’ve written so I thought I’d say hello and wish everyone the happiest of holidays. My beloved St. Bernard Wolfgang, passed in May of this year. A little more than a month ago we rescued Samson, pictured here waiting for his favorite blanket to come out of the
Nitrobunny
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
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. Tocilizumab
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. Tocilizumab
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
6 years ago
Long overdue update on Moms Giant Cell
I have to admit this was a ride I was not sure I could take with my Mom! Some of you will remember my posts of the battle she faced with her diagnosis of GCA.. I want to start by saying that as I thought, most, if not all of her worst symptoms were caused by the large doses of Prednisone. I had prayed
I have to admit this was a ride I was not sure I could take with my Mom! Some of you will remember my posts of the battle she faced with her diagnosis of GCA.. I want to start by saying that as I thought, most, if not all of her worst symptoms were caused by the large doses of Prednisone. I had prayed
Joyismami
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
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
Actemra and thrush.
I had developed thrush from prednisone and went on nystatin after I became aware of what I had. 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
I had developed thrush from prednisone and went on nystatin after I became aware of what I had. 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
Leeleep
in
PMRGCAuk
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
6 years ago
Actemra and PMR
Actemra has been a lifesaver for me and my GCA. It has enabled me to dose down the prednisone and still heal the GCA symptoms. However, as I dose down prednisone, the PMR pain is back. So, unless I stay on the strictest diet, PMR keeps me disabled. I’m wondering if the Actemra will eventually kick
Actemra has been a lifesaver for me and my GCA. It has enabled me to dose down the prednisone and still heal the GCA symptoms. However, as I dose down prednisone, the PMR pain is back. So, unless I stay on the strictest diet, PMR keeps me disabled. I’m wondering if the Actemra will eventually kick
Leeleep
in
PMRGCAuk
6 years ago
Tracking, focusing issues
I have had PMR for almost 4 years. 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. Don’t notice any visuals
I have had PMR for almost 4 years. 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. Don’t notice any visuals
Klah
in
PMRGCAuk
6 years ago
Change Health Care to get Actemra?
I have been a patient at Kaiser for 28 years. I have had no complaints to speak of. Easy access to treatment. Easy communication with my doctors. Not necessarily state of the art,I but evidence based approached to treatment. I have had botox for neck problems that have been wonderful. I get reimbursed
I have been a patient at Kaiser for 28 years. I have had no complaints to speak of. Easy access to treatment. Easy communication with my doctors. Not necessarily state of the art,I but evidence based approached to treatment. I have had botox for neck problems that have been wonderful. I get reimbursed
Hindags
in
PMRGCAuk
7 years ago
Prednisone Taper
Hello. This is my first post. In late June I spent a week in the hospital with fatigue, muscle ache and night sweats. I was diagnosed with GCA and PMR, put on 80 mg/day of Prednisone and discharged to the care of a Rheumatologist. The autoimmune symptoms subsided quickly, and my blood tests have returned
Hello. This is my first post. In late June I spent a week in the hospital with fatigue, muscle ache and night sweats. I was diagnosed with GCA and PMR, put on 80 mg/day of Prednisone and discharged to the care of a Rheumatologist. The autoimmune symptoms subsided quickly, and my blood tests have returned
GeorgeZiser
in
PMRGCAuk
7 years ago
Actemra Use
I have had ups and downs with prednisone in the 31/2 years since I started with PMR and then GCA. The doctor put me on Methotexrate about 2 years ago and tried to take me off of prednison entirely. It was a disaster, but she said that the Methotextrate was less damaging than prednisone. I had headaches
I have had ups and downs with prednisone in the 31/2 years since I started with PMR and then GCA. The doctor put me on Methotexrate about 2 years ago and tried to take me off of prednison entirely. It was a disaster, but she said that the Methotextrate was less damaging than prednisone. I had headaches
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. Cannot function
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. Cannot function
Leeleep
in
PMRGCAuk
7 years ago
The damage unchecked PMR can do........
My MRA scan result shows what appears to be stenosis in my Aorta. That is a narrowing of the Aortic Valve. Caused by inflammatory Vasculitis. This is damage that we take Prednisalone to prevent, as well as to feel better. I don't know much more than this yet, the Rheumatology Registrar just phoned. I
My MRA scan result shows what appears to be stenosis in my Aorta. That is a narrowing of the Aortic Valve. Caused by inflammatory Vasculitis. This is damage that we take Prednisalone to prevent, as well as to feel better. I don't know much more than this yet, the Rheumatology Registrar just phoned. I
SheffieldJane
in
PMRGCAuk
7 years ago
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