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RA and High Risk Category
I have RA and have weekly
Tocilizumab
injections. Last week my my 14yr old daughter had a sore throat and felt unwell. I spoke to the school who said to follow NHS guidance. She had a day off and felt better so went back to school. I spoke to my Doctor to ask if I should have my injection.
I have RA and have weekly
Tocilizumab
injections. Last week my my 14yr old daughter had a sore throat and felt unwell. I spoke to the school who said to follow NHS guidance. She had a day off and felt better so went back to school. I spoke to my Doctor to ask if I should have my injection.
Mouseling
in
NRAS
4 years ago
Tocilizumab after 12 months
Hi interested in if anyone has been on
tocilizumab
for GCA and what has happened after the 12 months nice funding
Hi interested in if anyone has been on
tocilizumab
for GCA and what has happened after the 12 months nice funding
Devoid
in
PMRGCAuk
4 years ago
I have to withhold my tocilizumab
This means that I have to withhold my
tocilizumab
. My concern is that if I have a flare what should I do. Increase my pred and by how much? I am now on 8mgms. Tried to reduce to 7mgms a couple of weeks ago but had to go back to 8 and seems settled now.
This means that I have to withhold my
tocilizumab
. My concern is that if I have a flare what should I do. Increase my pred and by how much? I am now on 8mgms. Tried to reduce to 7mgms a couple of weeks ago but had to go back to 8 and seems settled now.
Teekay2
in
PMRGCAuk
4 years ago
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Tocilizumab & Travel
I need a cheap way to take about 7 away. Journey post 28hrs including an airline journey. Read Victoria feom NRAS suggested asking lloyds healthcare at home, which i have done, they said no, same as hospital. Can anyone tell me a decend insulalated cool bag that doesnt cost the earth. Doing two trips
I need a cheap way to take about 7 away. Journey post 28hrs including an airline journey. Read Victoria feom NRAS suggested asking lloyds healthcare at home, which i have done, they said no, same as hospital. Can anyone tell me a decend insulalated cool bag that doesnt cost the earth. Doing two trips
Witsend8
in
NRAS
4 years ago
Then whose area of expertise is it, for crying out loud??
I am on
tocilizumab
and one of the warnings is for people who have had diverticulitis because of rare possibility of bowel perforation. Also, that the toc might mask the severity of the symptoms and also mask fever. Years ago, (about 15 yrs?)
I am on
tocilizumab
and one of the warnings is for people who have had diverticulitis because of rare possibility of bowel perforation. Also, that the toc might mask the severity of the symptoms and also mask fever. Years ago, (about 15 yrs?)
attatel
in
NRAS
4 years ago
Csn you help?
I joined as needed RA and
Tocilizumab
and travel questions answered, here seemed best place. O l posted & got some ideas. However, hospital nor their chosen deliverers Lloyds at home healthcare will deliver, loan or prescribe a travel bag. I know others have done so.
I joined as needed RA and
Tocilizumab
and travel questions answered, here seemed best place. O l posted & got some ideas. However, hospital nor their chosen deliverers Lloyds at home healthcare will deliver, loan or prescribe a travel bag. I know others have done so.
Witsend8
in
NRAS
4 years ago
Any Experience with Tocilizumab and GCA?
I am reading that it may reduce the likelihood of relapse and can reduce the long term dosage of Prednisone. Has anyone had experience with it, good or bad?
I am reading that it may reduce the likelihood of relapse and can reduce the long term dosage of Prednisone. Has anyone had experience with it, good or bad?
Brofort
in
PMRGCAuk
4 years ago
Tocilizumab for RA
I was wondering if anyone is taking
Tocilizumab
for their RA? I have just been prescribed monthly infusions following unsuccessful stints on Methotrexate and then Olumiant. I would love to know if it has helped you, what the administration process is like and if you have had any side effects.
I was wondering if anyone is taking
Tocilizumab
for their RA? I have just been prescribed monthly infusions following unsuccessful stints on Methotrexate and then Olumiant. I would love to know if it has helped you, what the administration process is like and if you have had any side effects.
MrsAouda
in
NRAS
4 years ago
back on Humira
[the previous three years Humira worked well for me] In this time he has tried Simponi Baricitinib and
Tocilizumab
, The latter two giving me bad side effects and had to be stopped. Do you think Humira will work again after all this time [it has been the best Biologic drug for me in the past]
[the previous three years Humira worked well for me] In this time he has tried Simponi Baricitinib and
Tocilizumab
, The latter two giving me bad side effects and had to be stopped. Do you think Humira will work again after all this time [it has been the best Biologic drug for me in the past]
ryburnvalleyestates
in
NRAS
4 years ago
Newly Launched Clinical Trial PMR
After her first injection of
tocilizumab
her C-reactive protein and serum amyloid A levels normalized and the pain in her shoulders and pelvic girdle improved, but her morning stiffness continued.
After her first injection of
tocilizumab
her C-reactive protein and serum amyloid A levels normalized and the pain in her shoulders and pelvic girdle improved, but her morning stiffness continued.
Hidden
in
PMRGCAuk
4 years ago
aGCA maybe in remission?
I have had GCA for 3 1/2 years and been on
tocilizumab
for 2 1/2 years. I never have normal blood tests and on November 8th my results were normal. Also I am quite suddenly feeling so much better and was amazed that I could walk up the hill and back with no trouble at all.
I have had GCA for 3 1/2 years and been on
tocilizumab
for 2 1/2 years. I never have normal blood tests and on November 8th my results were normal. Also I am quite suddenly feeling so much better and was amazed that I could walk up the hill and back with no trouble at all.
christine2715
in
PMRGCAuk
4 years ago
An unwanted Christmas present!
After 18 months on
Tocilizumab
with never a sniffle it had to come to ruin my Christmas! Crawled round to very sympathetic GP and crawled even more slowly to pharmacy for antibiotics. Think I will come to a completer standstill in M and S but hey a girls got to do what a girl has to do!
After 18 months on
Tocilizumab
with never a sniffle it had to come to ruin my Christmas! Crawled round to very sympathetic GP and crawled even more slowly to pharmacy for antibiotics. Think I will come to a completer standstill in M and S but hey a girls got to do what a girl has to do!
Pat9442
in
NRAS
4 years ago
RISKS OF STEROID MEDICATION AND CORONAVIRUS
If you have to self-isolate and if you are on immunosuppressive medication besides steroids (methotrexate, leflunomide, azathioprine,
tocilizumab
), you must stop those (but not the steroids) when you develop those symptoms and urgently inform your doctor. 3.
If you have to self-isolate and if you are on immunosuppressive medication besides steroids (methotrexate, leflunomide, azathioprine,
tocilizumab
), you must stop those (but not the steroids) when you develop those symptoms and urgently inform your doctor. 3.
Hidden
in
PMRGCAuk
4 years ago
Steroids
Come today I’m in so much pain so I wanted to know how long can you keep taking steroids until the
Tocilizumab
start to kick in.
Come today I’m in so much pain so I wanted to know how long can you keep taking steroids until the
Tocilizumab
start to kick in.
Crystal197
in
NRAS
4 years ago
Temporal Ultrasound May Be Useful in Giant Cell Arteritis Disease Monitoring (in patients paring corticosteroids with tocilizumab)
wouldn't it be great if ultrasounds became the standard and most reliable source for monitoring and tracking GCA, in all patients, not just those paring their corticosteroids with
tocilizumab
. The more tracking/monitoring, the more data... the more data, the more answers!
wouldn't it be great if ultrasounds became the standard and most reliable source for monitoring and tracking GCA, in all patients, not just those paring their corticosteroids with
tocilizumab
. The more tracking/monitoring, the more data... the more data, the more answers!
Hidden
in
PMRGCAuk
4 years ago
What We Did Right: Israeli Doctors Explain How They Beat the Coronavirus
To treat the inflammatory element of the illness, many doctors are using the drug Actemra (
tocilizumab
). “And in extreme cases steroids are also given as a treatment, which is controversial,” Shapira says.
To treat the inflammatory element of the illness, many doctors are using the drug Actemra (
tocilizumab
). “And in extreme cases steroids are also given as a treatment, which is controversial,” Shapira says.
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
4 years ago
Tocilizumab concerns ..
Had a steroid jab yesterday and am on 12.5 Methx and starting
Tocilizumab
in a couple of weeks .. I’ve read good feedback and fingers crossed it works but my concern is weight gain as I’ve lost 2 stone this year and feel good for that at least .
Had a steroid jab yesterday and am on 12.5 Methx and starting
Tocilizumab
in a couple of weeks .. I’ve read good feedback and fingers crossed it works but my concern is weight gain as I’ve lost 2 stone this year and feel good for that at least .
claireyj
in
NRAS
4 years ago
Dental pain
LVV diagnosis June 19 , now on
tocilizumab
weekly, methotrexate weekly and pred down to 16 mg daily. Started recently with sensitive teeth, particularly to cold drink, food or even breathing in cold air .
LVV diagnosis June 19 , now on
tocilizumab
weekly, methotrexate weekly and pred down to 16 mg daily. Started recently with sensitive teeth, particularly to cold drink, food or even breathing in cold air .
Devoid
in
Vasculitis UK
4 years ago
Suffering from GCA or Prednisolone
Six months ago it was mentioned by the consultant I might be a candidate for
tocilizumab
although he wasn't that keen due to side effects. It was deferred for 6 months.
Six months ago it was mentioned by the consultant I might be a candidate for
tocilizumab
although he wasn't that keen due to side effects. It was deferred for 6 months.
Stkeyna
in
PMRGCAuk
4 years ago
Tocilizumab
I have just had my first
tocilizumab
pen injection. How long did it take to work. I’m in a lot of pain as Enbral stopped working after the switch they introduced. I have been off any sort of treatment since Aug and as result the inflammation has spread to my feet and knees. Thank you
I have just had my first
tocilizumab
pen injection. How long did it take to work. I’m in a lot of pain as Enbral stopped working after the switch they introduced. I have been off any sort of treatment since Aug and as result the inflammation has spread to my feet and knees. Thank you
Crystal197
in
NRAS
4 years ago
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