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Anyone else on Actemra for PMR?
After two and a half years of trying to reduce pred doseage for PRM (I’m 72 and have osteoporosis) my rheumatologist got me approved for Actemra. Before adding Actemra, I couldn’t get below 10 mg pred daily (along with weekly methotrdxate) without a flare. I began monthly Actemra infusions in August
After two and a half years of trying to reduce pred doseage for PRM (I’m 72 and have osteoporosis) my rheumatologist got me approved for Actemra. Before adding Actemra, I couldn’t get below 10 mg pred daily (along with weekly methotrdxate) without a flare. I began monthly Actemra infusions in August
Terry615
in
PMRGCAuk
6 years ago
Cortisol and adrenals Pro where are you
My cortisol level was 1. Both my endocrinologist and rheumatologist did not seem concerned. My rheumatologist said my fatigue is mostly my arthritis and was caused by pain. Also said it was useless to take an adrenal test when you Are on 6.5 mg of prednisone. I had decided to stop myActemra and not even
My cortisol level was 1. Both my endocrinologist and rheumatologist did not seem concerned. My rheumatologist said my fatigue is mostly my arthritis and was caused by pain. Also said it was useless to take an adrenal test when you Are on 6.5 mg of prednisone. I had decided to stop myActemra and not even
Nap1
in
PMRGCAuk
6 years ago
23 with RA and osteoarthritis - help!
I'm new to this! I'm 23 years old and have RA. Sadly I've had it for as long as I can remember, actual diagnosis was when I was around 7. I've been on many medications over the years, methotrexate, sulphasalazine, humira, cimzia, actemra. More recently I have had significant joint damage to my knee,
I'm new to this! I'm 23 years old and have RA. Sadly I've had it for as long as I can remember, actual diagnosis was when I was around 7. I've been on many medications over the years, methotrexate, sulphasalazine, humira, cimzia, actemra. More recently I have had significant joint damage to my knee,
AmyDee207
in
NRAS
6 years ago
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Paid market research opportunity in London
Patients are invited who have been diagnosed with Rheumatoid Arthritis and who are taking methotrexate and a biologic adalimumab (Humira®), etanercept (Enbrel®, Benepali®and Erelzi®), certolizumab (Cimzia®), abatacept (Orencia®), tocilizumab (
RoActemra
®).
Patients are invited who have been diagnosed with Rheumatoid Arthritis and who are taking methotrexate and a biologic adalimumab (Humira®), etanercept (Enbrel®, Benepali®and Erelzi®), certolizumab (Cimzia®), abatacept (Orencia®), tocilizumab (
RoActemra
®).
Clare-NRAS
NRAS
in
NRAS
6 years ago
Low adrenal function at 6.5
For the pro. Finally talked my endocrinologist into doing a cortisol test at 6.5. I have been absolutely exhausted and had to exaggerate a little. He wanted to wait until 5. So as you are usually right at 6.5 very little adrenal function. Haven’t talk to him yet but thyroid also came out hypo. I will
For the pro. Finally talked my endocrinologist into doing a cortisol test at 6.5. I have been absolutely exhausted and had to exaggerate a little. He wanted to wait until 5. So as you are usually right at 6.5 very little adrenal function. Haven’t talk to him yet but thyroid also came out hypo. I will
Nap1
in
PMRGCAuk
6 years ago
side effects of actemra
I need to find out if others who have taken Actemra to reduce Prednisone dosage have had any side effects from this drug? I have read of some pretty significant side effects and am trying to determine is pros and cons of this drug. thanks, Pam
I need to find out if others who have taken Actemra to reduce Prednisone dosage have had any side effects from this drug? I have read of some pretty significant side effects and am trying to determine is pros and cons of this drug. thanks, Pam
phopmann
in
Pernicious Anaemia Society
6 years ago
PMR where are you?
Recap, 1 week ago my Rheumatologist gave me a shot of Depo Medrol because I had a terrible flare due to tapering to quickly that affected not just the shoulders but the fingers and knees. She advised me to stay at my current dose of Rayos for 2 months along with Actemra. 2 days after the shot all the
Recap, 1 week ago my Rheumatologist gave me a shot of Depo Medrol because I had a terrible flare due to tapering to quickly that affected not just the shoulders but the fingers and knees. She advised me to stay at my current dose of Rayos for 2 months along with Actemra. 2 days after the shot all the
Marie1479
in
PMRGCAuk
6 years ago
Depo Medrol shot for Flare
Hi everyone, I am on Actemra for PMR. I am also currently on 4mg of Rayos (time released Prednisone). I recently had a flare because I reduced too quickly. Completely my fault as I was feeling so great. The drop to 3mg was too fast and against Dr orders (and the Aunties). The next morning I could
Hi everyone, I am on Actemra for PMR. I am also currently on 4mg of Rayos (time released Prednisone). I recently had a flare because I reduced too quickly. Completely my fault as I was feeling so great. The drop to 3mg was too fast and against Dr orders (and the Aunties). The next morning I could
Marie1479
in
PMRGCAuk
6 years ago
Dosing Prednisone at end.
Because my thrush is not leaving while on Prednisone and all GCA symptoms are in remission I need to get off Prednisone ASAP. I’m at 6 mgs for 8 days. I saw a post earlier stating the person reduced.by .05 mgs a week. Is that considered safe? I see rheumatologist next week and will see what she thinks
Because my thrush is not leaving while on Prednisone and all GCA symptoms are in remission I need to get off Prednisone ASAP. I’m at 6 mgs for 8 days. I saw a post earlier stating the person reduced.by .05 mgs a week. Is that considered safe? I see rheumatologist next week and will see what she thinks
Leeleep
in
PMRGCAuk
6 years ago
GCA and Actemra
Diagnosed in November. On prednisone and Actemra. Lots of questions
Diagnosed in November. On prednisone and Actemra. Lots of questions
EA43
in
PMRGCAuk
6 years ago
blong
I am a 71 year old man, diagnosed in 2013 with GCA/PMR. My heritage is European/Scandinavian. I was first put on 60 mg Prednisone and then tapered down to 12. Due to relapses , I have gone back up to currently 40 mg due to blurred vision as well as other symptoms related to GCA. I have been using
I am a 71 year old man, diagnosed in 2013 with GCA/PMR. My heritage is European/Scandinavian. I was first put on 60 mg Prednisone and then tapered down to 12. Due to relapses , I have gone back up to currently 40 mg due to blurred vision as well as other symptoms related to GCA. I have been using
blong
in
PMRGCAuk
6 years ago
Stopping infusions
I totally realize that there aren’t many of you with GCA that are on actemra infusions. But I will ask anyhow .... in April it will be two years since I was diagnosed. I began on 60 prednisone and went down to 0 when starting the infusions. I am doing soooo much better. Some tiredness yet ...like
I totally realize that there aren’t many of you with GCA that are on actemra infusions. But I will ask anyhow .... in April it will be two years since I was diagnosed. I began on 60 prednisone and went down to 0 when starting the infusions. I am doing soooo much better. Some tiredness yet ...like
Buddyk
in
PMRGCAuk
6 years ago
Actemra
Good morning! I wanted to report about my Actemra treatment and how I feel after three weeks. I took my first injection on December 21, 2017 for GCA and felt already much less fatigued the next morning. After six days my chronic cough disappeared. I'm very happy to report that I'm still doing great,
Good morning! I wanted to report about my Actemra treatment and how I feel after three weeks. I took my first injection on December 21, 2017 for GCA and felt already much less fatigued the next morning. After six days my chronic cough disappeared. I'm very happy to report that I'm still doing great,
Akino
in
PMRGCAuk
6 years ago
Actemra (Tocilizumab) tummy problems
Happy new year all. I hope you had a lovely Christmas. I must admit that I found making the Christmas dinner hard work this year and was very grateful for my perching stool. 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
Happy new year all. I hope you had a lovely Christmas. I must admit that I found making the Christmas dinner hard work this year and was very grateful for my perching stool. 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
Hidden
in
NRAS
6 years ago
Sharing...
In my continual pursuit to educate myself I have bumped into some good resources. Hope they might help others too, so sharing. This is a lengthy but thorough article on GCA. You’ll note that many of the studies shared on PMRGCAuk are cited. https://urldefense.proofpoint.com/v2/url?u=http-3A__onlinelibrary.wiley.com_doi
In my continual pursuit to educate myself I have bumped into some good resources. Hope they might help others too, so sharing. This is a lengthy but thorough article on GCA. You’ll note that many of the studies shared on PMRGCAuk are cited. https://urldefense.proofpoint.com/v2/url?u=http-3A__onlinelibrary.wiley.com_doi
PMR2011
in
PMRGCAuk
6 years ago
Club zero getting closer - My Actemra story continues
As I look back at 2017 I can’t help but to be thankful for the support of my family and friends. All of you in this forum have been such a support and I will be so ever grateful. You all have been there for both the ups and downs. I read some of my old posts (which made me tear up) and was just so amazed
As I look back at 2017 I can’t help but to be thankful for the support of my family and friends. All of you in this forum have been such a support and I will be so ever grateful. You all have been there for both the ups and downs. I read some of my old posts (which made me tear up) and was just so amazed
Marie1479
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. Which test can I take at
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. Which test can I take at
Nap1
in
PMRGCAuk
6 years ago
Monotherapy with Actemra for GCA
Merry Christmas! I didn't write about my GCA journey for a while as the whole process was rather confusing and difficult to understand. But now it's time to share my story because it seems to be very different and I know it's important to learn about the whole spectrum of a disease. Diagnosed with GCA
Merry Christmas! I didn't write about my GCA journey for a while as the whole process was rather confusing and difficult to understand. But now it's time to share my story because it seems to be very different and I know it's important to learn about the whole spectrum of a disease. Diagnosed with GCA
Akino
in
PMRGCAuk
6 years ago
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
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