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Tocilizumab
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Not Happy
Hi all after 6 months on steroids following a real bad time on Cimzia, I was advised was going on
tocilizumab
. So went to see Rehumy nurse beginning of October I was asked how I was doing, general chat until I pointed out I was supposed to be there for the
tocilizumab
.
Hi all after 6 months on steroids following a real bad time on Cimzia, I was advised was going on
tocilizumab
. So went to see Rehumy nurse beginning of October I was asked how I was doing, general chat until I pointed out I was supposed to be there for the
tocilizumab
.
shazbat
in
NRAS
10 years ago
Neutrophils
I am on
Tocilizumab
for my RA and should have had treatment today, but (not for the first time) I was unable to have it because my neutrophils had dropped too low. Does anyone else have the same problem?
I am on
Tocilizumab
for my RA and should have had treatment today, but (not for the first time) I was unable to have it because my neutrophils had dropped too low. Does anyone else have the same problem?
Littlefruitbat
in
NRAS
10 years ago
tocilizumab and neck pain
I had my first infusion on Wednesday and about 2 hours later started having a twinge on the side of my neck which gradually got worse, ended up taking 2 codeine and paracetamol every 4 hours, coving my neck with gel and anything else to try to stop the pain. Two days later the neck is slightly better
I had my first infusion on Wednesday and about 2 hours later started having a twinge on the side of my neck which gradually got worse, ended up taking 2 codeine and paracetamol every 4 hours, coving my neck with gel and anything else to try to stop the pain. Two days later the neck is slightly better
Ozzy
in
NRAS
10 years ago
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Hi. I have had a really sore dry throat & what sounds like a smokers cough although i have never smoked in my life. Should i be concerned.
I am on monthly infusion of
tocilizumab
. I have already had a week of antibiotics about 4 weeks ago. Fed up of feeling so ill & tired :-( Alison xx
I am on monthly infusion of
tocilizumab
. I have already had a week of antibiotics about 4 weeks ago. Fed up of feeling so ill & tired :-( Alison xx
alibromo
in
NRAS
10 years ago
Can anyone share their experiences of Tocilizumab? I've been on everything and reacted. This is latest suggestion. I have ANA antibodies.
peejay74
in
NRAS
10 years ago
Lung nodules
My drug is
tocilizumab
, no Mtx, and no other drugs of significance. I use co-codamol too. Thanks.
My drug is
tocilizumab
, no Mtx, and no other drugs of significance. I use co-codamol too. Thanks.
tilstongal
in
NRAS
10 years ago
Changing biologics
No longer having
tocilizumab
will be changing to simponi, not sure how long the change will take to implement, not to long hopefully. Feeling a little more positive today.
No longer having
tocilizumab
will be changing to simponi, not sure how long the change will take to implement, not to long hopefully. Feeling a little more positive today.
Crazyjo
in
NRAS
10 years ago
Cholesterol!
Gone up to 8.4 since been on
tocilizumab
. Not happy as be more drugs to control that to now!
Gone up to 8.4 since been on
tocilizumab
. Not happy as be more drugs to control that to now!
Crazyjo
in
NRAS
10 years ago
Infusion done!
Tocilizumab
infusion done. Need to have lung function for my chest and for the ulcers I need to up my dose of folic acid. Give it couple days and see how the pain goes, if no better I be back on the phone for some more steroids
Tocilizumab
infusion done. Need to have lung function for my chest and for the ulcers I need to up my dose of folic acid. Give it couple days and see how the pain goes, if no better I be back on the phone for some more steroids
Crazyjo
in
NRAS
10 years ago
TOCILIZUMAB (RoActemra)
Here's something to cheer you all up. Just had my 9th Toc infusion and 9th consec month of CRP &ESR of 1 & 2 respect and 9th month of remission without side effects or any infections whatsoever.
Here's something to cheer you all up. Just had my 9th Toc infusion and 9th consec month of CRP &ESR of 1 & 2 respect and 9th month of remission without side effects or any infections whatsoever.
harryhunt
in
NRAS
10 years ago
Nearly time
Blood test this morning, fingers crossed all ok so can have my
tocilizumab
infusion Wednesday afternoon.. Felt like a long wait but almost here. Just hope I get the relief I need this time as can't carry on like been the last two weeks
Blood test this morning, fingers crossed all ok so can have my
tocilizumab
infusion Wednesday afternoon.. Felt like a long wait but almost here. Just hope I get the relief I need this time as can't carry on like been the last two weeks
Crazyjo
in
NRAS
10 years ago
So slow!
This week seems to be going so slow, rang rhuemy nurse again this time she was polite but advised have to wait for my
tocilizumab
and if need more steroids will see after that... Frustrated and in pain!
This week seems to be going so slow, rang rhuemy nurse again this time she was polite but advised have to wait for my
tocilizumab
and if need more steroids will see after that... Frustrated and in pain!
Crazyjo
in
NRAS
10 years ago
Having Tocilizumab infusions and now having migraines.
I've had five
Tocilizumab
infusions now and after the last one, two weeks ago I had a debilitating migraine that laid me low for six days. The migraine itself lasted three days and my blood pressure was very high.
I've had five
Tocilizumab
infusions now and after the last one, two weeks ago I had a debilitating migraine that laid me low for six days. The migraine itself lasted three days and my blood pressure was very high.
Hils
in
NRAS
10 years ago
No help
Waste of time just told to keep myself dosed up on painkillers till my
tocilizumab
infusion next week....and then wait till see them for my rescore to see if it helping... That's helpful I think not
Waste of time just told to keep myself dosed up on painkillers till my
tocilizumab
infusion next week....and then wait till see them for my rescore to see if it helping... That's helpful I think not
Crazyjo
in
NRAS
10 years ago
Rhuemy visit today
Just been to rhuemy on emergency app due to bad flare up, at hospital tomorrow morning for steroid infusion then try
tocilizumab
again in 2 weeks time.... Just hope this works!
Just been to rhuemy on emergency app due to bad flare up, at hospital tomorrow morning for steroid infusion then try
tocilizumab
again in 2 weeks time.... Just hope this works!
Crazyjo
in
NRAS
10 years ago
Omg another flare up!
Now understand while was feeling low Sunday have woke up today and started a very painful flare up, rang the rhuemy helpline and waiting for call back as been on
tocilizumab
since November and due again in two weeks...
Now understand while was feeling low Sunday have woke up today and started a very painful flare up, rang the rhuemy helpline and waiting for call back as been on
tocilizumab
since November and due again in two weeks...
Crazyjo
in
NRAS
10 years ago
Anyone on Tocilizumab?
I've had about 7 infusions now, I felt like a mirac!e cure at the time, but now its stopped being effective, everything I seem to take becomes ineffective, Has this happened to to anyone else?
I've had about 7 infusions now, I felt like a mirac!e cure at the time, but now its stopped being effective, everything I seem to take becomes ineffective, Has this happened to to anyone else?
mccpain
in
NRAS
10 years ago
Drugs refused funding...
When I saw Dr Jayne in October he was going to try to get
Tocilizumab
for me but the funding appears to have been refused. They're also not sure they'll be able to get infliximab either and as rituximab isn't licensed for large vessel Vasculitis that might prove difficult too!
When I saw Dr Jayne in October he was going to try to get
Tocilizumab
for me but the funding appears to have been refused. They're also not sure they'll be able to get infliximab either and as rituximab isn't licensed for large vessel Vasculitis that might prove difficult too!
JElsom
in
Vasculitis UK
11 years ago
RA and TB
I went to see the rhummy today prepared to argue my case for
tocilizumab
without mtx when he told me that my blood test that I had before to check that it was ok for this drug came back positive for TB! Chest xray was clear.
I went to see the rhummy today prepared to argue my case for
tocilizumab
without mtx when he told me that my blood test that I had before to check that it was ok for this drug came back positive for TB! Chest xray was clear.
Ozzy
in
NRAS
11 years ago
Anyone been on tocilizumab?
Hi all We had a call on the helpline today from someone wanting to know what being on
tocilizumab
is like. Specifically, they wondered if people tend to feel ill on the day of the infusion/the days after.
Hi all We had a call on the helpline today from someone wanting to know what being on
tocilizumab
is like. Specifically, they wondered if people tend to feel ill on the day of the infusion/the days after.
Victoria-NRAS
Administrator
in
NRAS
11 years ago
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