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Accents question
I am on Actemra til next August ( once a week) for GCA. Just wondering as I really didn’t have any worrisome symptoms other than an occasional slightly tight jaw while eating. They did the Artery biopsy which validated my Rheumatologist’s opinion.How do they determine if it is gone ? Is it just your
I am on Actemra til next August ( once a week) for GCA. Just wondering as I really didn’t have any worrisome symptoms other than an occasional slightly tight jaw while eating. They did the Artery biopsy which validated my Rheumatologist’s opinion.How do they determine if it is gone ? Is it just your
Darcy2000
in
PMRGCAuk
4 years ago
Good news and Great news~!!!
My 12-year-old grandson, Mattias, had a bad sore throat, headache and fever last Sunday and Monday. He had a test for Covid which came back negative this morning, thank heaven. Yesterday he called me because "my mom says you are concerned about me and I want you to know I feel much better." So did I
My 12-year-old grandson, Mattias, had a bad sore throat, headache and fever last Sunday and Monday. He had a test for Covid which came back negative this morning, thank heaven. Yesterday he called me because "my mom says you are concerned about me and I want you to know I feel much better." So did I
Grammy80
in
PMRGCAuk
4 years ago
Scared of drugs. Take pred as no choice there. Now waiting for approval for actemra.
After much research I think the side effects are extreme and I am not willing to give it a try. Has anyone else rejected this treatment. ? I do ok on pred so I think over time the GCA will burn out As I think the PMR already has. Over the phone I also agreed to a yearly infusion of a biphosphonate as
After much research I think the side effects are extreme and I am not willing to give it a try. Has anyone else rejected this treatment. ? I do ok on pred so I think over time the GCA will burn out As I think the PMR already has. Over the phone I also agreed to a yearly infusion of a biphosphonate as
Chopin002
in
PMRGCAuk
4 years ago
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Chiropractor culprit
I see a chiropractor every two weeks to keep this old body from falling apart. After each session I’m a little sore but eventually feel better than when I arrived. She always asks about areas that I have trouble with such as hips and my neck. This time I replied that neck was pretty good but hips and
I see a chiropractor every two weeks to keep this old body from falling apart. After each session I’m a little sore but eventually feel better than when I arrived. She always asks about areas that I have trouble with such as hips and my neck. This time I replied that neck was pretty good but hips and
Blackcatlover
in
PMRGCAuk
4 years ago
Starting actemra this month
Good morning. I have been approved for actemra starting this month. I have had GCA since October 2018. Started at 60prednisone. Reduced to 9 by July 5 2020. Then lost 1/3 of my eye sight in my right eye overnight on July 6. Up to 50. Now at 39. My question: what rate did you reduce your prednisone
Good morning. I have been approved for actemra starting this month. I have had GCA since October 2018. Started at 60prednisone. Reduced to 9 by July 5 2020. Then lost 1/3 of my eye sight in my right eye overnight on July 6. Up to 50. Now at 39. My question: what rate did you reduce your prednisone
alvertta
in
PMRGCAuk
4 years ago
GCA diagnosis, but no high dose steroids.
I have a wonderful, caring rheumy. She sends me for every test. She calls me at home regularly . She told me she wants to give me the best care possible. I have monthly bloodwork done and a CRP as much as weekly if necessary. I have had PMR for 2 years. I think I have had GCA for a year but kept hoping
I have a wonderful, caring rheumy. She sends me for every test. She calls me at home regularly . She told me she wants to give me the best care possible. I have monthly bloodwork done and a CRP as much as weekly if necessary. I have had PMR for 2 years. I think I have had GCA for a year but kept hoping
Chopin002
in
PMRGCAuk
4 years ago
I’m sort of back ....have missed you.
It has been a wild ride not feeling that great and planning a move from Maine to Indiana with the hopes of seeing my grandchildren in Canada for a month....well....you know where the best laid plans go, don’t you? It has been so long since I’ve been ‘on’, I hope you are all doing well and I hope there
It has been a wild ride not feeling that great and planning a move from Maine to Indiana with the hopes of seeing my grandchildren in Canada for a month....well....you know where the best laid plans go, don’t you? It has been so long since I’ve been ‘on’, I hope you are all doing well and I hope there
Grammy80
in
PMRGCAuk
4 years ago
Failure with multiple biologics for RA
Hi. Has anyone had any failures with multiple biologics and what did you do? I was doing great with Humira for a long time then I had my second child and a huge flare up during pregnancy and after, which has not settled down 1 year later. I can’t be on methotrexate and Arava caused major hair loss so
Hi. Has anyone had any failures with multiple biologics and what did you do? I was doing great with Humira for a long time then I had my second child and a huge flare up during pregnancy and after, which has not settled down 1 year later. I can’t be on methotrexate and Arava caused major hair loss so
Esti
in
Behçet's UK
4 years ago
Actemra inj 200 mg instead of 162 mg - Is it OK for GCA ?
I have GCA since end 2018 . Am on prednisone and Actemra since 2019. We now have Actemra 200 mg inj alone available where I live . So then is it ok to take 200 mg instead of the standard 162 mg injection ? Anyone who has done this ? TIA
I have GCA since end 2018 . Am on prednisone and Actemra since 2019. We now have Actemra 200 mg inj alone available where I live . So then is it ok to take 200 mg instead of the standard 162 mg injection ? Anyone who has done this ? TIA
Iwillwin123
in
PMRGCAuk
4 years ago
PET CT Scans and what feels like 'interminable' GCA
Hi All I have had GCA for about three and a half years now and it is getting incredibly 'boring' in terms of even wanting to write about it. But for those who may be as FED UP with this intractable disease as I have been lately might think a wee 'blah' here is acceptable. I tried recently here in OZ
Hi All I have had GCA for about three and a half years now and it is getting incredibly 'boring' in terms of even wanting to write about it. But for those who may be as FED UP with this intractable disease as I have been lately might think a wee 'blah' here is acceptable. I tried recently here in OZ
Rimmy
in
PMRGCAuk
4 years ago
GCA & Shingrix vaccine
Does anyone have experience having Shingrix vaccine (shingles vaccine)? I am on 10 mg prednisone, boniva for osteoporosis, Actemra & Dexilant. Rheumatologist said he wants me to do the 2 part vaccine. He also said, "It could make you sick but I want you to do both parts anyway." I know shingles is a
Does anyone have experience having Shingrix vaccine (shingles vaccine)? I am on 10 mg prednisone, boniva for osteoporosis, Actemra & Dexilant. Rheumatologist said he wants me to do the 2 part vaccine. He also said, "It could make you sick but I want you to do both parts anyway." I know shingles is a
Spanky2019
in
PMRGCAuk
4 years ago
Atemra injections
Hi, is anyone on the Actemra injection for PMR? I went from prednisone, to Embrel and now Atemra . I now can walk 2 to 3 miles with some pain and stiffness but have leg pain the next day. I do suffer at night with shoulder and arm pain. I never know how I will feel from one day to the next.
Hi, is anyone on the Actemra injection for PMR? I went from prednisone, to Embrel and now Atemra . I now can walk 2 to 3 miles with some pain and stiffness but have leg pain the next day. I do suffer at night with shoulder and arm pain. I never know how I will feel from one day to the next.
mpl615
in
PMRGCAuk
4 years ago
Resuming Actemra... but now foot and leg pain. Any thoughts?
I had to stop Actemra for a month because of illness and have had a rough time resuming the injections. The first two injections brought headaches, nausea, flu-like symptoms, fatigue and a runny nose for 2 days ...memories of the symptoms I had experienced when I first started Actemra last November.
I had to stop Actemra for a month because of illness and have had a rough time resuming the injections. The first two injections brought headaches, nausea, flu-like symptoms, fatigue and a runny nose for 2 days ...memories of the symptoms I had experienced when I first started Actemra last November.
GratefulBailey
in
PMRGCAuk
4 years ago
Need clarification
I have been on Actemra for three years having 4mg of Actemra per kilogram weight administered by IV every twenty eight days. When doing 8mg of Actemra per kilogram weight I had all kinds of issues so for the last year and half it’s been 4mg. My doctor is switching me to the Actemra Actpen to be administered
I have been on Actemra for three years having 4mg of Actemra per kilogram weight administered by IV every twenty eight days. When doing 8mg of Actemra per kilogram weight I had all kinds of issues so for the last year and half it’s been 4mg. My doctor is switching me to the Actemra Actpen to be administered
Blackcatlover
in
PMRGCAuk
4 years ago
Actemra querie
Hello Everyone, I saw my Rheumatologist today and she is a little concerned about my very low white blood cell count, (heading into neutropenia territory), and so she is changing my tocilizumab jabs to fortnightly. She doesn’t think it will make a difference to my inflammation, which is in “normal”
Hello Everyone, I saw my Rheumatologist today and she is a little concerned about my very low white blood cell count, (heading into neutropenia territory), and so she is changing my tocilizumab jabs to fortnightly. She doesn’t think it will make a difference to my inflammation, which is in “normal”
LemonZest11
in
PMRGCAuk
4 years ago
Another Actemra question
I realize this is a question for my Dr but not seeing him for a month .Feeling heady and pressure in head and hopefully this side effect wanes .Has anyone who has been on Actemra has their dosage reduced to once every 2 weeks instead of once a week and if so So did it help with side effects .Definitely
I realize this is a question for my Dr but not seeing him for a month .Feeling heady and pressure in head and hopefully this side effect wanes .Has anyone who has been on Actemra has their dosage reduced to once every 2 weeks instead of once a week and if so So did it help with side effects .Definitely
Darcy2000
in
PMRGCAuk
4 years ago
Actemra side effects
Will check with my Rheumy in 3 weeks but just wondering if anyone had side effects from Actemra and wondering if the Med has an an accumulative affect . First 3 weeks had no signs but tonight real light headedness
Will check with my Rheumy in 3 weeks but just wondering if anyone had side effects from Actemra and wondering if the Med has an an accumulative affect . First 3 weeks had no signs but tonight real light headedness
Darcy2000
in
PMRGCAuk
4 years ago
Actemra and reducing prednisone
Hi Everyone I have had my 5th actemra weekly injection. I reduced my pred. from 15mg to 14&1/2 mg. I have been on the 14&1/2 for 5 days and I started getting hip stiffness and pain. I took the 1/2 mg and within hours the pain subsided. I decided to take 9mg at 11 pm (my normal time) and around 2-3am
Hi Everyone I have had my 5th actemra weekly injection. I reduced my pred. from 15mg to 14&1/2 mg. I have been on the 14&1/2 for 5 days and I started getting hip stiffness and pain. I took the 1/2 mg and within hours the pain subsided. I decided to take 9mg at 11 pm (my normal time) and around 2-3am
Linny3
in
PMRGCAuk
4 years ago
Another Actemra question
Not seeing my Rheumy til September so thought I would ask this question After you finish your year with Actemra does the CRP start To climb again if your GCA is not in remission? In regards to GCA I am pretty symptom free so just wondering how they determine if the GCA is in remission
Not seeing my Rheumy til September so thought I would ask this question After you finish your year with Actemra does the CRP start To climb again if your GCA is not in remission? In regards to GCA I am pretty symptom free so just wondering how they determine if the GCA is in remission
Darcy2000
in
PMRGCAuk
4 years ago
Actemra question
Started Actemra 2 weeks ago on a weekly basis for GCA/PMR .My CRP which was hovering between 30 to 40 has dropped to 2.7 ...does this appear normal? I Am on 15 mg Pred with plans to start tapering .
Started Actemra 2 weeks ago on a weekly basis for GCA/PMR .My CRP which was hovering between 30 to 40 has dropped to 2.7 ...does this appear normal? I Am on 15 mg Pred with plans to start tapering .
Darcy2000
in
PMRGCAuk
4 years ago
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