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Taper Update
I successfully tapered to 6MGs (dropped 1/2mg) and have continued my weekly
Actemra
shots. Here's an interesting question and observation. The year before I was diagnosed with PMR my nails were a mess. Splitting, ridges and very thin.
I successfully tapered to 6MGs (dropped 1/2mg) and have continued my weekly
Actemra
shots. Here's an interesting question and observation. The year before I was diagnosed with PMR my nails were a mess. Splitting, ridges and very thin.
Marie1479
in
PMRGCAuk
7 years ago
Enan Illuc
I am now on 14 mg of Prednisone and
Actemra
. I am retired and married. My education includes an MBA and a D.Sc. (AM).
I am now on 14 mg of Prednisone and
Actemra
. I am retired and married. My education includes an MBA and a D.Sc. (AM).
enan-illuc
in
PMRGCAuk
7 years ago
Recovered from Flare, tapering resumes...
I requested my dr. to run the bloodwork again and if the same result I told her I wanted to rule out
Actemra
first before going on Plaquenil. Turns out I don't have Lupus.
Actemra
causes low C3 &C4 levels mimicking Lupus and some of the disease's symptoms.
I requested my dr. to run the bloodwork again and if the same result I told her I wanted to rule out
Actemra
first before going on Plaquenil. Turns out I don't have Lupus.
Actemra
causes low C3 &C4 levels mimicking Lupus and some of the disease's symptoms.
Marie1479
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
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.
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.
Buddyk
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
Need help, I am very confused
Isn't
Actemra
better for me ?
Isn't
Actemra
better for me ?
Ihsandaakur
in
PMRGCAuk
7 years ago
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.
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.
Nap1
in
PMRGCAuk
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 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.
Hindags
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
Vasculitis Relaspse after Injury?
I am now treated on low dose steroid , methotrexate and
Actemra
Alti IL6 and Angina medicines. Recently after a remission I am having a relapse after I had a fall and injured my spine. My
Actemra
dose went back to one per week and all my cardiac medicines are now doubled. I am 46 yrs old Female .
I am now treated on low dose steroid , methotrexate and
Actemra
Alti IL6 and Angina medicines. Recently after a remission I am having a relapse after I had a fall and injured my spine. My
Actemra
dose went back to one per week and all my cardiac medicines are now doubled. I am 46 yrs old Female .
PriyaSomasundaran
in
Vasculitis UK
7 years ago
To PMRPro or anyone knows my crazy history feel free to pop in
I am hoping the
Actemra
will not bring on numerous infections and all the other things you can acquire before I can get down to 10. Any thoughts?
I am hoping the
Actemra
will not bring on numerous infections and all the other things you can acquire before I can get down to 10. Any thoughts?
Nap1
in
PMRGCAuk
7 years ago
Where from here PRO
Together we decided I need to try
Actemra
. Have lots of skin cancer just diagnosed and need surgery. Also never had my eye surgery and everything is on hold. Have been trying to get down to 10 and it's not happening. If blood tests ok for
Actemra
that's my next step.
Together we decided I need to try
Actemra
. Have lots of skin cancer just diagnosed and need surgery. Also never had my eye surgery and everything is on hold. Have been trying to get down to 10 and it's not happening. If blood tests ok for
Actemra
that's my next step.
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
Flat after Rheumy today
Then came the plan B if Pred "isn't cutting it" such as Methotrexate/
Actemra
. I said, "but they can have bad side effects as well" to which he said people with GCA do better.
Then came the plan B if Pred "isn't cutting it" such as Methotrexate/
Actemra
. I said, "but they can have bad side effects as well" to which he said people with GCA do better.
SnazzyD
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
Actemra being sued???
Why is
actemra
being sued?
Why is
actemra
being sued?
Buddyk
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.
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.
rbeams11
in
NRAS
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
Itching
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.
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.
30048
in
PMRGCAuk
7 years ago
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