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Some Words Of Encouragement. Update
Hi Everyone, It is now 24 weeks since my last
Tocilizumab
infusion. I have just had the best summer I have had since 2003!! Still massive problems with Chronic Fatigue, but now I can have several days in a row when I do not need to spend at least half the day in bed.
Hi Everyone, It is now 24 weeks since my last
Tocilizumab
infusion. I have just had the best summer I have had since 2003!! Still massive problems with Chronic Fatigue, but now I can have several days in a row when I do not need to spend at least half the day in bed.
AARA
in
NRAS
7 years ago
GCA Alterma treatment
Question rheumy wants to discuss additional treatment with Alterma(
tocilizumab
). My insurance should cover. Any input to help with my decision. Side effects scary--infection, heart attacks, stroke, heart failure, pancreatitis, interstial lung disease. Remission and steroid sparing results good.
Question rheumy wants to discuss additional treatment with Alterma(
tocilizumab
). My insurance should cover. Any input to help with my decision. Side effects scary--infection, heart attacks, stroke, heart failure, pancreatitis, interstial lung disease. Remission and steroid sparing results good.
LCHRISTOP10
in
PMRGCAuk
7 years ago
GCA and Tocilizumab
I had my first infusion nearly three weeks ago. For over a year my ESR and CRP have been really high, generally in the 70's. My first blood test has shown a sudden drop to normal for CRP and only just over normal - 20 - for ESR. I am really amazed and not sure what this means. On the minus side my
I had my first infusion nearly three weeks ago. For over a year my ESR and CRP have been really high, generally in the 70's. My first blood test has shown a sudden drop to normal for CRP and only just over normal - 20 - for ESR. I am really amazed and not sure what this means. On the minus side my
christine2715
in
PMRGCAuk
7 years ago
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Metojet dosage
I am now waiting for the funding to be approved for
Tocilizumab
. I have my concerns about that, but that's not what I'm leading up to here.
I am now waiting for the funding to be approved for
Tocilizumab
. I have my concerns about that, but that's not what I'm leading up to here.
Jora
in
NRAS
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?
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?
dwsurquhart
in
NRAS
7 years ago
White cell counts on Actemra
My current med load is 400mg iv q 4weeks Actemra (
Tocilizumab
), tylenol #3 2/day, doxycycline 2/day (helps with cartilage retention), furosemide 10mg once every few days to keep water retention in check.
My current med load is 400mg iv q 4weeks Actemra (
Tocilizumab
), tylenol #3 2/day, doxycycline 2/day (helps with cartilage retention), furosemide 10mg once every few days to keep water retention in check.
dwsurquhart
in
NRAS
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
GCA and Tocilizumab
I have just heard that I have funding and approval from the NHS to take
Tocilizumab
and will be having my first infusion this week or the week after. Then I have weekly injections after. I wondered if anyone knew if there are any immediate effects. Also do you go on taking other medications.
I have just heard that I have funding and approval from the NHS to take
Tocilizumab
and will be having my first infusion this week or the week after. Then I have weekly injections after. I wondered if anyone knew if there are any immediate effects. Also do you go on taking other medications.
christine2715
in
PMRGCAuk
7 years ago
My Story
I started
Tocilizumab
about 6 months ago and the drug is working. I've not had any steroid injections for over 6 months now as they seemed to not work as good as before. The
Tocilizumab
is working. I am also on methotrexate this has caused me to lose all my long hair.
I started
Tocilizumab
about 6 months ago and the drug is working. I've not had any steroid injections for over 6 months now as they seemed to not work as good as before. The
Tocilizumab
is working. I am also on methotrexate this has caused me to lose all my long hair.
KatieBirdie
in
NRAS
7 years ago
Some Words of Encouragement. Severe RA and No Meds. right now. The Benefits of a Healthier Microbiome
Many drugs were tried, but nothing, which I could tolerate, brought the disease under control, until I started on infusions of
Tocilizumab
.
Many drugs were tried, but nothing, which I could tolerate, brought the disease under control, until I started on infusions of
Tocilizumab
.
AARA
in
NRAS
7 years ago
Giant Cell Arteritis and Tocilizumab Patient Experience Needed
If you have been treated with
Tocilizumab
for Giant Cell Arteritis VUK would like to hear of your experiences both good and bad. Please contact John Mills email John.mills@vasculitis.org.uk as soon as possible
If you have been treated with
Tocilizumab
for Giant Cell Arteritis VUK would like to hear of your experiences both good and bad. Please contact John Mills email John.mills@vasculitis.org.uk as soon as possible
Suzym2u
Vasculitis UK
in
Vasculitis UK
7 years ago
Tocilizumab and Actermra input urgently requested to support Vasculitis.org
Hello all, John Mills at vascuulitis.org.uk is looking for feedback from patients who are diagnosed with GCA and have been or are being treated with
tocilizumab
also known as Actermra. Your global location does not matter and good or bad experiences are welcomed.
Hello all, John Mills at vascuulitis.org.uk is looking for feedback from patients who are diagnosed with GCA and have been or are being treated with
tocilizumab
also known as Actermra. Your global location does not matter and good or bad experiences are welcomed.
Tj2017
in
PMRGCAuk
7 years ago
Tofacitinib
So discussion took place on wether my current Bioligical
Tocilizumab
is perhaps loosing it's effectiveness.... One suggestion was Tofacitinib. Having read the side effects I note among the extensive list that cancer could be one. Has anyone any experience of this drug? Thanks Chez
So discussion took place on wether my current Bioligical
Tocilizumab
is perhaps loosing it's effectiveness.... One suggestion was Tofacitinib. Having read the side effects I note among the extensive list that cancer could be one. Has anyone any experience of this drug? Thanks Chez
Chezis21
in
NRAS
7 years ago
Tocilizumab
Hi has anyone experienced weight gain with
Tocilizumab
?
Hi has anyone experienced weight gain with
Tocilizumab
?
Hellbells
in
NRAS
7 years ago
Newspaper article
Hi all, Thought you might like to read about the
tocilizumab
trial patient in the Sunday Express mag. http://www.express.co.uk/life-style/health/828572/disease-health-PMR-condition-drug-trial
Hi all, Thought you might like to read about the
tocilizumab
trial patient in the Sunday Express mag. http://www.express.co.uk/life-style/health/828572/disease-health-PMR-condition-drug-trial
granny-b
in
PMRGCAuk
7 years ago
Sunday Times 16 July 2017
Sunday Times 16 July 2017 If you have access to a Sunday Times today (16 July 2017) the magazine carries an interesting article (page 32) about a lady from Bournemouth who has GCA and PMR and has been involved in
tocilizumab
trial.
Sunday Times 16 July 2017 If you have access to a Sunday Times today (16 July 2017) the magazine carries an interesting article (page 32) about a lady from Bournemouth who has GCA and PMR and has been involved in
tocilizumab
trial.
DevonMichael
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.
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.
PMRpro
Ambassador
in
PMRGCAuk
7 years ago
Tocilizumab
Hi guys had my first injection this morning now I have a warm flushing sensation in my upper body! Is this normal ? Thanks in advance Pete.
Hi guys had my first injection this morning now I have a warm flushing sensation in my upper body! Is this normal ? Thanks in advance Pete.
Pedz
in
NRAS
7 years ago
Newbie with Temporal Arteritis. New drug Tocilizumab (actrema)
My Rheumatologist wants me to go on
Tocilizumab
. I am very much afraid of a major side effect, tears in the stomach and bowel. Has anyone taken this drug?
My Rheumatologist wants me to go on
Tocilizumab
. I am very much afraid of a major side effect, tears in the stomach and bowel. Has anyone taken this drug?
Hidden
in
PMRGCAuk
7 years ago
Tocilizumab reaction after 9 months
Unfortunately I'm taking
tocilizumab
for my GCA and PMR in addition to my RA and it's done a great job of knocking my inflammation down. My labs are practically normal.
Unfortunately I'm taking
tocilizumab
for my GCA and PMR in addition to my RA and it's done a great job of knocking my inflammation down. My labs are practically normal.
Nitrobunny
in
NRAS
7 years ago
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