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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. However, this
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. However, this
Dream21
in
PMRGCAuk
5 years ago
Femur surgery 1 month ago
So I fell and broke the left femur which is the knee that needs replacing. Big rod from hip to knee. 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
So I fell and broke the left femur which is the knee that needs replacing. Big rod from hip to knee. 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
Nap1
in
PMRGCAuk
5 years ago
Biologics
Maybe I just haven't found the right section, but I don't see any mention of anyone taking a biologic drug in addition to prednisone. 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
Maybe I just haven't found the right section, but I don't see any mention of anyone taking a biologic drug in addition to prednisone. 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
valb232
in
PMRGCAuk
5 years ago
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Question about increasing tocilizumab (Actemra) dose schedule
Hi, I've had RA 8 years and failed my first biologic, Enbrel. 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 moved to the UK 8 months ago after
Hi, I've had RA 8 years and failed my first biologic, Enbrel. 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 moved to the UK 8 months ago after
HanaleiBa
in
NRAS
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. I’ve only had 2 flare ups
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. I’ve only had 2 flare ups
beringer
in
PMRGCAuk
5 years ago
Gifford43
Hey! Thanks for telling me to get a CRP-HS test, due to my regular CRP test always coming back "normal". Lucky I had a pre-GCA number to compare to! It's 1.2 and the hs test I just had is 4.1. Above normal, which tells me (I think) why I get my ole jaw claudication/pain when I taper. That helps me explain
Hey! Thanks for telling me to get a CRP-HS test, due to my regular CRP test always coming back "normal". Lucky I had a pre-GCA number to compare to! It's 1.2 and the hs test I just had is 4.1. Above normal, which tells me (I think) why I get my ole jaw claudication/pain when I taper. That helps me explain
Hidden
in
PMRGCAuk
5 years ago
Success! Off of prednisone and Actemra.
Hi. GCA/PMR 8-2017, start 60mg prednisone. 10-2017 started weekly shots of Actemra and started tapering prednisone. Miracle happen Feb. 1,2018... I found this forum! I read the post of others, got educated more on these disease and began to believe “ I can get through this”. And I did. Last prednisone
Hi. GCA/PMR 8-2017, start 60mg prednisone. 10-2017 started weekly shots of Actemra and started tapering prednisone. Miracle happen Feb. 1,2018... I found this forum! I read the post of others, got educated more on these disease and began to believe “ I can get through this”. And I did. Last prednisone
Kentucky5
in
PMRGCAuk
5 years ago
Tocilizumab(Actemra) withdrawn
I am due to inject tomorrow and only discovered my Actemra had been withdrawn due to funding 5 days ago after I had been told they had no prescription for me. So I have no injections and no warning. I was on the drug trial and categorically told the one year rule would not apply to me. NICE have only
I am due to inject tomorrow and only discovered my Actemra had been withdrawn due to funding 5 days ago after I had been told they had no prescription for me. So I have no injections and no warning. I was on the drug trial and categorically told the one year rule would not apply to me. NICE have only
christine2715
in
PMRGCAuk
5 years ago
Lupus with vasculitis
My main diagnosis is GCA Vasculitis and probably PMR vasculitis, but it seems that I might have Lupus. My GCA is good. I’m down to 4 mgs prednisone. I had over a year of Actemra biologic shots but had to stop because of dividiculitis. My body pain is just unbearable and certain markers for possibly
My main diagnosis is GCA Vasculitis and probably PMR vasculitis, but it seems that I might have Lupus. My GCA is good. I’m down to 4 mgs prednisone. I had over a year of Actemra biologic shots but had to stop because of dividiculitis. My body pain is just unbearable and certain markers for possibly
Aleish
in
LUPUS UK
5 years ago
Major flare gca
For PMRpro and anyone who feels free hop in. I have been ok on Actemra twice monthly also 9 mg pred. Stopped the Actemra for two weeks for eye surgery and every muscle is useless and vile pain. Had dvt and pe and have been on blood thinners. Off now. ESR 47 CRP 12. In one week. ESR Was 7 and .06. Major
For PMRpro and anyone who feels free hop in. I have been ok on Actemra twice monthly also 9 mg pred. Stopped the Actemra for two weeks for eye surgery and every muscle is useless and vile pain. Had dvt and pe and have been on blood thinners. Off now. ESR 47 CRP 12. In one week. ESR Was 7 and .06. Major
Nap1
in
PMRGCAuk
5 years ago
Prednisone Actemra and MTX
Does anyone have experience taking prednisone, Actemra and MTX all at the same time?
Does anyone have experience taking prednisone, Actemra and MTX all at the same time?
Lauren103
in
PMRGCAuk
5 years ago
Horrible gca headache!! (and update)
I haven't written in a while. My journey is so convoluted that I have to keep a note pad to be able to keep up myselt. Since I last wrote, I went to Mayo Clinic here in Florida. There was no real diagnosis. Simply put, my blood test shows pretty definite GPA (granulomatosis with polyangitis).
I haven't written in a while. My journey is so convoluted that I have to keep a note pad to be able to keep up myselt. Since I last wrote, I went to Mayo Clinic here in Florida. There was no real diagnosis. Simply put, my blood test shows pretty definite GPA (granulomatosis with polyangitis).
pattypoo01
in
PMRGCAuk
5 years ago
GCA
After a week spent at Mayo, I was diagnosed with GCA back in November. I started on 65 mg of prednisone and this past March started Actemra. I do not, nor have I ever had headaches. The only thing that I had was jaw pain. I had a temporal lobe biopsy done after the diagnosis which came back negative
After a week spent at Mayo, I was diagnosed with GCA back in November. I started on 65 mg of prednisone and this past March started Actemra. I do not, nor have I ever had headaches. The only thing that I had was jaw pain. I had a temporal lobe biopsy done after the diagnosis which came back negative
luv2read
in
PMRGCAuk
5 years ago
Want to know about Actemra
My Doctor is thinking of putting me on Actemra. I would like to know what other people think of this. Seems scary.
My Doctor is thinking of putting me on Actemra. I would like to know what other people think of this. Seems scary.
confused2
in
PMRGCAuk
5 years ago
Travelling with RoActemra (Tocilizumab)
Hi -does anyone have any experience with travelling with
RoActemra
(Tocilizumab) . I need to be able to keep it at 2 - 8 degrees C for approximately 8-10 hours (to airport on plane etc.) before getting somewhere with a fridge. Any ideas would be great thanks
Hi -does anyone have any experience with travelling with
RoActemra
(Tocilizumab) . I need to be able to keep it at 2 - 8 degrees C for approximately 8-10 hours (to airport on plane etc.) before getting somewhere with a fridge. Any ideas would be great thanks
TTCC
in
NRAS
5 years ago
Actemra
Is Actemra available to you. Have been getting it every four weeks IV for four years. It is one of the newer biologics. I am doing exceptionally well on it with no side effects.
Is Actemra available to you. Have been getting it every four weeks IV for four years. It is one of the newer biologics. I am doing exceptionally well on it with no side effects.
Seaberry
in
NRAS
5 years ago
Stomach irritation most of time.
Summer in America leaves most patients with docs on vacation and appointments more difficult. Ironically, the ER is for acute situations. The chronic ones are patched if they can be and then patient is always told to notify their PC or specialist. My Rheumatologist accepts email but does not always
Summer in America leaves most patients with docs on vacation and appointments more difficult. Ironically, the ER is for acute situations. The chronic ones are patched if they can be and then patient is always told to notify their PC or specialist. My Rheumatologist accepts email but does not always
Aleish
in
PMRGCAuk
5 years ago
Stelara for GCA
My doctor wants to try Stelara biologic shots for my treatment because I was no longer able to continue Actemra when I got dividiculitis. Some small studies have shown promise in GCA. She would try and get me approved for it based on a previous diagnosis of psoriatic arthritis . I really don’t think
My doctor wants to try Stelara biologic shots for my treatment because I was no longer able to continue Actemra when I got dividiculitis. Some small studies have shown promise in GCA. She would try and get me approved for it based on a previous diagnosis of psoriatic arthritis . I really don’t think
Aleish
in
PMRGCAuk
5 years ago
Actmera
Hi All I haven’t been on in awhile. So many things going on! My question today: is anyone taking Actemra as a monthly infusion? After my Rheumatologist drained syringes full of fluid from my knee and my overall pain level being high in all my joints, he feels the 25mgs of Methotrexate is not enough
Hi All I haven’t been on in awhile. So many things going on! My question today: is anyone taking Actemra as a monthly infusion? After my Rheumatologist drained syringes full of fluid from my knee and my overall pain level being high in all my joints, he feels the 25mgs of Methotrexate is not enough
EdieB
in
NRAS
5 years ago
GCA,Actemra, Prednisone and IL6
I have GCA diagnosed since 4 months. I am on Actemra 162 mg subcutaneous since a month. I am also on 30 mg prednisone currently though have stepped down from 60 mg over last three months. On advice from some of the well- informed people here, I have been testing for my ESR and CRP which had settled
I have GCA diagnosed since 4 months. I am on Actemra 162 mg subcutaneous since a month. I am also on 30 mg prednisone currently though have stepped down from 60 mg over last three months. On advice from some of the well- informed people here, I have been testing for my ESR and CRP which had settled
Iwillwin123
in
PMRGCAuk
5 years ago
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