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Just chatted with a gentleman with GCA
After I see what this taper does and the
Actemra
effect.....maybe February???? I want to do what I can to get my life functioning better. I'm so happy I came upon this forum....have a great day~!!!! I'm going to wrap some Christmas presents. You should see them~!!!
After I see what this taper does and the
Actemra
effect.....maybe February???? I want to do what I can to get my life functioning better. I'm so happy I came upon this forum....have a great day~!!!! I'm going to wrap some Christmas presents. You should see them~!!!
Grammy80
in
PMRGCAuk
5 years ago
Actemra Trial Update
This is an interesting article regarding the 2 year follow up of the original
Actemra
trial. https://apple.news/APxvd6gUCSmeN97URVzEqVg
This is an interesting article regarding the 2 year follow up of the original
Actemra
trial. https://apple.news/APxvd6gUCSmeN97URVzEqVg
cmgarner
in
PMRGCAuk
5 years ago
PMR, Actemra, and IgM antibodies
Started with methotrexate and plaquenil for a few months, and then started monthly
Actemra
infusions. I'm pretty much pain free these days, primarily because of the
Actemra
, I think, and I'm now getting an infusion every two months. Blood tests indicate that the inflammation is under control.
Started with methotrexate and plaquenil for a few months, and then started monthly
Actemra
infusions. I'm pretty much pain free these days, primarily because of the
Actemra
, I think, and I'm now getting an infusion every two months. Blood tests indicate that the inflammation is under control.
grandemr
in
PMRGCAuk
5 years ago
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Rheumatoid arthritis info wanted
Does anyone know if St Mary’s Rheumatology Dept on the Isle of Wight administer the biological infusion of Roactemra.? I am in the process of returning to UK from France and need to continue with my present treatment . Any info would be most welcome
Does anyone know if St Mary’s Rheumatology Dept on the Isle of Wight administer the biological infusion of Roactemra.? I am in the process of returning to UK from France and need to continue with my present treatment . Any info would be most welcome
Hopegalore
in
Arthritis Action
5 years ago
Rheumatoid Arthritis & Actemra
Secondly we feel that lowering the dosage of
Actemra
might mitigate or reverse this decline in the wbc count. I would appreciate knowing if any of you have experienced this problem with
Actemra
and what you have done about it.
Secondly we feel that lowering the dosage of
Actemra
might mitigate or reverse this decline in the wbc count. I would appreciate knowing if any of you have experienced this problem with
Actemra
and what you have done about it.
paulbasel
in
NRAS
5 years ago
New aid ....to me!
I'm on 24 methylpred and
Actemra
...and will drop off 8 mg for three weeks, then cut an addtional 4 mg for three weeks and so it goes....he is hoping I am off in 3-4 months...we shall see. I'd told him I'd be happy to coast on 20 but he said my body wouldn't take it.
I'm on 24 methylpred and
Actemra
...and will drop off 8 mg for three weeks, then cut an addtional 4 mg for three weeks and so it goes....he is hoping I am off in 3-4 months...we shall see. I'd told him I'd be happy to coast on 20 but he said my body wouldn't take it.
Grammy80
in
PMRGCAuk
5 years ago
GCA f/u to ongoing journey.
Rheumy wants me to think about
Actemra
. He's continuing 40 mg pred & with complete rest again I'm hoping all gets better. I'll see him again in a few weeks to discuss all this when I feel better. Will have mri done to see if something else is causing low back pain & weakness.
Rheumy wants me to think about
Actemra
. He's continuing 40 mg pred & with complete rest again I'm hoping all gets better. I'll see him again in a few weeks to discuss all this when I feel better. Will have mri done to see if something else is causing low back pain & weakness.
Spanky2019
in
PMRGCAuk
5 years ago
Burning discomfort hamstrings
Actemra
good results, except mouth sores and frequent upper respiratory infections. Necessary to stop due to breast cancer, 11/18. Lumpectomy, radiation and currently taking Anastrozole(estrogen and progesterone blocker) Feeling well all summer and fall.
Actemra
good results, except mouth sores and frequent upper respiratory infections. Necessary to stop due to breast cancer, 11/18. Lumpectomy, radiation and currently taking Anastrozole(estrogen and progesterone blocker) Feeling well all summer and fall.
LCHRISTOP10
in
PMRGCAuk
5 years ago
HAPPY NEW YEAR TO ALL~~~🤞😊🖤👍
One thing I have learned, some the hard way, that though I am on steroids and
Actemra
~~I have a collection of other health conditions which must be considered in managing my steroid and interlukin....those drugs affect the effectiveness of my other medications.
One thing I have learned, some the hard way, that though I am on steroids and
Actemra
~~I have a collection of other health conditions which must be considered in managing my steroid and interlukin....those drugs affect the effectiveness of my other medications.
Grammy80
in
PMRGCAuk
5 years ago
Femur surgery 1 month ago
So I am on 13 mg of pred. and just went back on
Actemra
. CRP 138 and ESR 65. Didn’t increase steroids but did go back on
Actemra
. Am in rehab so it’s not easy to change meds. I had
Actemra
at home so friend brought it in with Rheumatologist ok. CRP was the sensitive one. I can’t figure it out.
So I am on 13 mg of pred. and just went back on
Actemra
. CRP 138 and ESR 65. Didn’t increase steroids but did go back on
Actemra
. Am in rehab so it’s not easy to change meds. I had
Actemra
at home so friend brought it in with Rheumatologist ok. CRP was the sensitive one. I can’t figure it out.
Nap1
in
PMRGCAuk
5 years ago
GCA NICE Recommendations UK Tocilizumab
https://www.nice.org.uk/guidance/ta518/chapter/1-Recommendations Paste and Go in your URL For Refractory GCA Patients, your country posted these recommendations for
Actemra
(Tocilizumab) for GCA. I am a refractory patient. Do not worry. I will not post again or look at comments.
https://www.nice.org.uk/guidance/ta518/chapter/1-Recommendations Paste and Go in your URL For Refractory GCA Patients, your country posted these recommendations for
Actemra
(Tocilizumab) for GCA. I am a refractory patient. Do not worry. I will not post again or look at comments.
Dream21
in
PMRGCAuk
5 years ago
Biologics
Is anyone taking
Actemra
or any other drug that is helping their GCA symptoms? Or something for PMR? I would very much like to hear from anyone who is or was, and the effect, side effects, etc. Thank you in advance.
Is anyone taking
Actemra
or any other drug that is helping their GCA symptoms? Or something for PMR? I would very much like to hear from anyone who is or was, and the effect, side effects, etc. Thank you in advance.
valb232
in
PMRGCAuk
5 years ago
Newly Launched Clinical Trial PMR
The one ray of hope that biologic therapy might be beneficial in PMR comes from a recent case report by rheumatologists at Osaka (Japan) University detailing a dramatic response to tocilizumab (
Actemra
) in a 65-year-old woman with long-standing steroid-refractory PMR complicated by diabetes, osteoporosis
The one ray of hope that biologic therapy might be beneficial in PMR comes from a recent case report by rheumatologists at Osaka (Japan) University detailing a dramatic response to tocilizumab (
Actemra
) in a 65-year-old woman with long-standing steroid-refractory PMR complicated by diabetes, osteoporosis
Hidden
in
PMRGCAuk
5 years ago
Actemra experience
Actemra
worked wonders on My GCA PMR, But did damage to My poor body. I was sick the entire winter with lung infections all brought on by the infusion , Then got a very bad case of Diverticulitis with a massive abscess on the bowel, so with that My Dr stopped all infusions.
Actemra
worked wonders on My GCA PMR, But did damage to My poor body. I was sick the entire winter with lung infections all brought on by the infusion , Then got a very bad case of Diverticulitis with a massive abscess on the bowel, so with that My Dr stopped all infusions.
beringer
in
PMRGCAuk
5 years ago
Question about increasing tocilizumab (Actemra) dose schedule
I went on
Actemra
and had great results. I feel good, but my VETRA test (US based) and now my ultra-sound results for my wrists show severe disease activity. So, it feels like I'm in remission, but I'm not.
I went on
Actemra
and had great results. I feel good, but my VETRA test (US based) and now my ultra-sound results for my wrists show severe disease activity. So, it feels like I'm in remission, but I'm not.
HanaleiBa
in
NRAS
5 years ago
Gifford43
Next step is the
Actemra
path. Hope you are doing well too.
Next step is the
Actemra
path. Hope you are doing well too.
Hidden
in
PMRGCAuk
5 years ago
Success! Off of prednisone and Actemra.
Tapering off
Actemra
7-2019!! I am doing great . I have found my “new normal”. Active ( running and exercising)but not as intense. Happy to be in Club Zero! Thank you to ALL who contributed to this forum!!
Tapering off
Actemra
7-2019!! I am doing great . I have found my “new normal”. Active ( running and exercising)but not as intense. Happy to be in Club Zero! Thank you to ALL who contributed to this forum!!
Kentucky5
in
PMRGCAuk
5 years ago
Tocilizumab(Actemra) withdrawn
This drug has been amazing for me - GCA had been a life changer and
Actemra
gave me my life back. I am very fearful about what will happen next. Can anyone tell me their experiences of coming off
Actemra
.
This drug has been amazing for me - GCA had been a life changer and
Actemra
gave me my life back. I am very fearful about what will happen next. Can anyone tell me their experiences of coming off
Actemra
.
christine2715
in
PMRGCAuk
5 years ago
Cyclophosamide
She is in the UK (which seems to be behind US patients in getting the biologic drug
actemra
). If anyone else has experience with this drug- please tell me. I update her on all the relevant things I read. She has GCA and PMR. Thanks
She is in the UK (which seems to be behind US patients in getting the biologic drug
actemra
). If anyone else has experience with this drug- please tell me. I update her on all the relevant things I read. She has GCA and PMR. Thanks
Relative
in
PMRGCAuk
5 years ago
I'M NEW HERE AND ON PREDNISOLONE FOR A YEAR FOR GCA
Since being diagnosed last October with GCA and prescribed Prednisolone, I've had breathing difficulties and fluid retention for which I am being treated but not very successfully - are the two connected? Does any other member have these difficulties. I've Googled and while there is no established evidence
Since being diagnosed last October with GCA and prescribed Prednisolone, I've had breathing difficulties and fluid retention for which I am being treated but not very successfully - are the two connected? Does any other member have these difficulties. I've Googled and while there is no established evidence
technogran
in
PMRGCAuk
5 years ago
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