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Actemra
Hi everyone I am Meegan 54years and I think on my 48th infusion of Actemra. I have tried every drug available for my RA and this works.. .sort of...does anyone else feel they have gained heaps of weight but their eating patterns should be doing the adverse, or has your cholesterol go E out of control
Hi everyone I am Meegan 54years and I think on my 48th infusion of Actemra. I have tried every drug available for my RA and this works.. .sort of...does anyone else feel they have gained heaps of weight but their eating patterns should be doing the adverse, or has your cholesterol go E out of control
Megsy54
in
NRAS
7 years ago
Any have dizziness/light headedness?
I have had GCA for 1 1/2 years. And from the USA and on the actemra infusions monthly...my dosage is 386 a month. In 1 1/2 years I have found only one other person who has GCA so when I found this group they was a real blessing. I'm wondering if anyone else experiences a fair amount of light headedness
I have had GCA for 1 1/2 years. And from the USA and on the actemra infusions monthly...my dosage is 386 a month. In 1 1/2 years I have found only one other person who has GCA so when I found this group they was a real blessing. I'm wondering if anyone else experiences a fair amount of light headedness
Buddyk
in
PMRGCAuk
7 years ago
White cell counts on Actemra
Hello all of you in RA land. I have been doing a bit of research on my bloodwork and have noticed something you folk on Actemra might like. The last couple if infusions of Actemra I have received, i have had the dosage lowered. I started at 600mg IV q4weeks (7 months), 2 have been at 480mg and the last
Hello all of you in RA land. I have been doing a bit of research on my bloodwork and have noticed something you folk on Actemra might like. The last couple if infusions of Actemra I have received, i have had the dosage lowered. I started at 600mg IV q4weeks (7 months), 2 have been at 480mg and the last
dwsurquhart
in
NRAS
7 years ago
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Actemra and Prednisone and next reduction
So after 6 shots of Actemra down to 12.5 with an ESR of 5 and CRP of 1. For me it's a miracle. Been on each reduction 2 weeks. Following protocol. Love when New Rhuemy says "12.5 what do you think"? Eye here's the rub (think that's English expression) if blood ok next reduction is to 10 which is more
So after 6 shots of Actemra down to 12.5 with an ESR of 5 and CRP of 1. For me it's a miracle. Been on each reduction 2 weeks. Following protocol. Love when New Rhuemy says "12.5 what do you think"? Eye here's the rub (think that's English expression) if blood ok next reduction is to 10 which is more
Nap1
in
PMRGCAuk
7 years ago
Treatment of Systemic Onset JIA with Actemra (Tocilizumab)
My 2 year old Son was diagnosed with Systemic onset JIA on in June 2017. Though the symptoms started few days before diagnosis, pediatric rheumatologist started treatment of SoJIA after ruling out septic arthritis. NSAID - 2 weeks Predinsolone - 4 weeks ( 2mg/kg/day) - Now in tapering
My 2 year old Son was diagnosed with Systemic onset JIA on in June 2017. Though the symptoms started few days before diagnosis, pediatric rheumatologist started treatment of SoJIA after ruling out septic arthritis. NSAID - 2 weeks Predinsolone - 4 weeks ( 2mg/kg/day) - Now in tapering
Siva_Uddanti
in
JIA-at-NRAS
7 years ago
Taper Update
Hi everyone ! Just a quick update. I'm feeling great these days. 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.
Hi everyone ! Just a quick update. I'm feeling great these days. 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
I need help deciding:
I was diagnosed with PMR last Dec. and am currently on 9.5 mgs (day 1). I live in the USA and am on a Medicare Advantage Plan through my former employer, Kaiser Permanente an HMO. I've been with Kaiser for almost 30 years and have had no real complaints. But if I'm going to maximize the possibility
I was diagnosed with PMR last Dec. and am currently on 9.5 mgs (day 1). I live in the USA and am on a Medicare Advantage Plan through my former employer, Kaiser Permanente an HMO. I've been with Kaiser for almost 30 years and have had no real complaints. But if I'm going to maximize the possibility
Hindags
in
PMRGCAuk
7 years ago
Enan Illuc
Hi I am Enan. I live in Illinois, USA. I am 70 years old and was in good health until I 'joined this club' with GCA and PMR in June of 2016 with a positive diagnosis in August of 2016 (I temporarily lost sight in my left eye at this time). I started at 60mg of Prednisone, started to taper had a major
Hi I am Enan. I live in Illinois, USA. I am 70 years old and was in good health until I 'joined this club' with GCA and PMR in June of 2016 with a positive diagnosis in August of 2016 (I temporarily lost sight in my left eye at this time). I started at 60mg of Prednisone, started to taper had a major
enan-illuc
in
PMRGCAuk
7 years ago
Recovered from Flare, tapering resumes...
Hi Everyone, School is back in session and I am back to working full time. I am so grateful to have had the summer off to recuperate. Unfortunately as you all know from my last post I suffered a flare due to a stress related incident in July. I was down to 4MG (with Actemra). I increased to 5MG but
Hi Everyone, School is back in session and I am back to working full time. I am so grateful to have had the summer off to recuperate. Unfortunately as you all know from my last post I suffered a flare due to a stress related incident in July. I was down to 4MG (with Actemra). I increased to 5MG but
Marie1479
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. 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
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
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