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Anyone outside the USA on actemra yet? Looking for reactions to the drug here in USA and abroad. Heard anything PMRGCApro?
So I had my third shot of Actemra on Thursday. Luckily I was approved for funding. I want to mention the side effects which I found after the third shot which is more muscle fatigue than the steroid myopathy rather debilitating. Lots of muscle pain and headache. My stomach has been sensitive for
So I had my third shot of Actemra on Thursday. Luckily I was approved for funding. I want to mention the side effects which I found after the third shot which is more muscle fatigue than the steroid myopathy rather debilitating. Lots of muscle pain and headache. My stomach has been sensitive for
Nap1
in
PMRGCAuk
7 years ago
How much to push yourself
I've had GCA for 16 months....took prednisone and progressed to only actemra infusions once a month. My main problem has been extreme fatigue. I have been feeling better the last 2 weeks. I am fairly strong until middle of afternoon then begin to feel fatigued again. My question is ...if I push
I've had GCA for 16 months....took prednisone and progressed to only actemra infusions once a month. My main problem has been extreme fatigue. I have been feeling better the last 2 weeks. I am fairly strong until middle of afternoon then begin to feel fatigued again. My question is ...if I push
Buddyk
in
PMRGCAuk
7 years ago
Need help, I am very confused
I was diagnosed as GCA 5 months ago and was put on 80 mg prednisone. Then prednisone didn't work well for me and they put me on azathioprine 200 mg and methotrexate injections. Also they didn't work for me and still have severe temple and eye pain in addition to jaw and ear pain). During those 5 months
I was diagnosed as GCA 5 months ago and was put on 80 mg prednisone. Then prednisone didn't work well for me and they put me on azathioprine 200 mg and methotrexate injections. Also they didn't work for me and still have severe temple and eye pain in addition to jaw and ear pain). During those 5 months
Ihsandaakur
in
PMRGCAuk
7 years ago
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Medicare and Actemra
Is Medicare coverage available for Actemra?
Is Medicare coverage available for Actemra?
Aleish
in
PMRGCAuk
7 years ago
Prednisone taper, breast pain
I am tapering themprednisone while on Actemra infusions...also on hrt. Has anyone experienced breast pain while tapering down to 5m?
I am tapering themprednisone while on Actemra infusions...also on hrt. Has anyone experienced breast pain while tapering down to 5m?
Klah
in
PMRGCAuk
7 years ago
Actemra (Tocilizumab) questions
Hello all other Tocilizumab patients. A coupe of question for you all. Have you noticed since being on Tocilizumab that your appetite has diminished yet you are gaining weight? Have you noticed that your hair is growing in finer or you are losing hair? That your finger and toe nails seem to be growing
Hello all other Tocilizumab patients. A coupe of question for you all. Have you noticed since being on Tocilizumab that your appetite has diminished yet you are gaining weight? Have you noticed that your hair is growing in finer or you are losing hair? That your finger and toe nails seem to be growing
dwsurquhart
in
NRAS
7 years ago
Actemra enroute soonish?
I spoke to a rheumatologist the other day who has been in touch with Genentech, the drug company that makes Actemra. She said they are pushing for Actemra to be approved, for PMR by the FDA and are hoping to get the approval fast tracked, within a year or so. I know there's many a slip, but sounds good
I spoke to a rheumatologist the other day who has been in touch with Genentech, the drug company that makes Actemra. She said they are pushing for Actemra to be approved, for PMR by the FDA and are hoping to get the approval fast tracked, within a year or so. I know there's many a slip, but sounds good
Hindags
in
PMRGCAuk
7 years ago
To PMRPro or anyone knows my crazy history feel free to pop in
we all know I move back to the north east to go to a real pro rheumatologist. He proceeded to reduce me so quickly I had a third relapse at 12mg. It made me sicker than I have ever been in my entire life. My CRP went to 33 and my ESR went to 42. I upped my dose to 20 mg from 10 and my CRP went down
we all know I move back to the north east to go to a real pro rheumatologist. He proceeded to reduce me so quickly I had a third relapse at 12mg. It made me sicker than I have ever been in my entire life. My CRP went to 33 and my ESR went to 42. I upped my dose to 20 mg from 10 and my CRP went down
Nap1
in
PMRGCAuk
7 years ago
Vasculitis Relaspse after Injury?
Hi , I am Priya . I had often had cutaneous vasulitis concentrated on my lower legs during my childhood . Often had painful ulsers on both legs which healed on steriods treatment. Later after at the age of 32 I began to get chest pain and head ache with my BP shooting up. Since Coronory Angio was normal
Hi , I am Priya . I had often had cutaneous vasulitis concentrated on my lower legs during my childhood . Often had painful ulsers on both legs which healed on steriods treatment. Later after at the age of 32 I began to get chest pain and head ache with my BP shooting up. Since Coronory Angio was normal
PriyaSomasundaran
in
Vasculitis UK
7 years ago
Where from here PRO
As You always said the more you relapse the harder to get back. So my NYC rheumy reduced so quickly that I relapsed and became very, very ill. He ignored the high CRP and the ESR was low and didn't think hm....something is wrong with this blood work. The lab screwed up, but he kept reducing. Never been
As You always said the more you relapse the harder to get back. So my NYC rheumy reduced so quickly that I relapsed and became very, very ill. He ignored the high CRP and the ESR was low and didn't think hm....something is wrong with this blood work. The lab screwed up, but he kept reducing. Never been
Nap1
in
PMRGCAuk
7 years ago
Actemra injections. USA
I'm going to start these injections for PMR/GCA. I have been on prednisone for six years; have had to have IV prednisone last year for GCA symptoms; down to 15 mg prednisone now, tapering every two weeks down to ten and then one mg a month below that. I'm at the point that prednisone is damaging me
I'm going to start these injections for PMR/GCA. I have been on prednisone for six years; have had to have IV prednisone last year for GCA symptoms; down to 15 mg prednisone now, tapering every two weeks down to ten and then one mg a month below that. I'm at the point that prednisone is damaging me
EmmaLaura
in
PMRGCAuk
7 years ago
Are you/have you been on Actemra for GCA? Feedback required
There is a request on the VasculitisUK forum looking for patient experiences: https://healthunlocked.com/vasculitis-uk/posts/135990337/giant-cell-arteritis-and-tocilizumab-patient-experience-needed Suzy and John would be delighted if you would have a look and contribute. I have told her that many of
There is a request on the VasculitisUK forum looking for patient experiences: https://healthunlocked.com/vasculitis-uk/posts/135990337/giant-cell-arteritis-and-tocilizumab-patient-experience-needed Suzy and John would be delighted if you would have a look and contribute. I have told her that many of
PMRpro
Ambassador
in
PMRGCAuk
7 years ago
Flare up
Hi woke up this morning with red knuckles seem to be having a flare up all my joints hurt.This seems to be my worst flate up sonce starting
roactemra
in september.Feel crapy and down today with pain.Hoping will pass so i dont have to go to gp.
Hi woke up this morning with red knuckles seem to be having a flare up all my joints hurt.This seems to be my worst flate up sonce starting
roactemra
in september.Feel crapy and down today with pain.Hoping will pass so i dont have to go to gp.
Trace1974
in
NRAS
7 years ago
Back to square one with GCA
Just to refresh your recollection. I moved from Florida to New Jersey to see a special doctor in New York City because in Florida I had no guidance whatsoever. So at the end of April I met my new Doctor Who did the trials for a Actemra. I was then on 30 mg with some serious steroid myopathy. His
Just to refresh your recollection. I moved from Florida to New Jersey to see a special doctor in New York City because in Florida I had no guidance whatsoever. So at the end of April I met my new Doctor Who did the trials for a Actemra. I was then on 30 mg with some serious steroid myopathy. His
Nap1
in
PMRGCAuk
7 years ago
Actemra and effects?
Hello I am new here and would like to know has anyone tried Actemra. I have only been taking Neproxen 500mg 2x a day until my second appointment with my Rheumatoligist. He sai d that since I have a history of non-Hodgkins Lymphoma I could not start on the normal mexotrexate and DMARDS. This is all new
Hello I am new here and would like to know has anyone tried Actemra. I have only been taking Neproxen 500mg 2x a day until my second appointment with my Rheumatoligist. He sai d that since I have a history of non-Hodgkins Lymphoma I could not start on the normal mexotrexate and DMARDS. This is all new
rbeams11
in
NRAS
7 years ago
Itching
I also have begun to itch . After five years i did not blame the ptednisone ... i blamed the actemra shot and was told to take benadryl. That did work. I have changed to the coated tablet of prednisone tho and even though i am not taking The actema right now i still itch. My glorious doctor declared
I also have begun to itch . After five years i did not blame the ptednisone ... i blamed the actemra shot and was told to take benadryl. That did work. I have changed to the coated tablet of prednisone tho and even though i am not taking The actema right now i still itch. My glorious doctor declared
30048
in
PMRGCAuk
7 years ago
Actemra FDA approved
For those of us in the US, it is great to note that the FDA has expanded the use of Actemra (tocilizumab) to treat giant cell arteritis in adults. This is the first FDA-approved therapy for GCA, granted under a breakthrough therapy designation and priority review.
For those of us in the US, it is great to note that the FDA has expanded the use of Actemra (tocilizumab) to treat giant cell arteritis in adults. This is the first FDA-approved therapy for GCA, granted under a breakthrough therapy designation and priority review.
Nruble
in
PMRGCAuk
7 years ago
Actemra being sued???
Why is actemra being sued?
Why is actemra being sued?
Buddyk
in
PMRGCAuk
7 years ago
Tocilizumab/Actemra - and biosimilars
I thought with all the discussion about using Actemra in GCA people might find this article interesting: https://scrip.pharmamedtechbi.com/-/media/Supporting-Documents/Scrip-Issue-PDFs/2017/scrip_3852.pdf?la=en Actemra's patent is due to expire in the next few years and at least 3 companies are testing
I thought with all the discussion about using Actemra in GCA people might find this article interesting: https://scrip.pharmamedtechbi.com/-/media/Supporting-Documents/Scrip-Issue-PDFs/2017/scrip_3852.pdf?la=en Actemra's patent is due to expire in the next few years and at least 3 companies are testing
PMRpro
Ambassador
in
PMRGCAuk
7 years ago
Diet instead of meds
Hi I'm 55 and have had RA for 9+ years. I take several meds including an infusion of actemra on a monthly basis. I would like to buy the Clint paddison book and try the program but I'm not sure if the book has the whole diet program. If there is anyone who has bought the book please let me know. Thanks
Hi I'm 55 and have had RA for 9+ years. I take several meds including an infusion of actemra on a monthly basis. I would like to buy the Clint paddison book and try the program but I'm not sure if the book has the whole diet program. If there is anyone who has bought the book please let me know. Thanks
Mbestaunt
in
NRAS
7 years ago
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