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Me again with a moan sorry in advance
Hope you nice folks are doing ok.. i hate to be like me me me all.the time on here but here I go me my dilemma is I cant have the ritx no more due to cv but doubt it worked as well.this year it's a bit like puzzle this RA so i had a steroid injection last Tuesday and my meds have been changed to
tocilizumab
Hope you nice folks are doing ok.. i hate to be like me me me all.the time on here but here I go me my dilemma is I cant have the ritx no more due to cv but doubt it worked as well.this year it's a bit like puzzle this RA so i had a steroid injection last Tuesday and my meds have been changed to
tocilizumab
Vonnie10
in
NRAS
4 years ago
biologic working - how quick can I come down on my steroids?
I have been taking
tocilizumab
for nearly 4 weeks and am starting to feel a difference in pain! The consultant said if it starts working he wants me to drop down on my steroids but he didn’t advise how quickly I am able to. Any advice given would be great, thank you.
I have been taking
tocilizumab
for nearly 4 weeks and am starting to feel a difference in pain! The consultant said if it starts working he wants me to drop down on my steroids but he didn’t advise how quickly I am able to. Any advice given would be great, thank you.
conniegraham
in
NRAS
4 years ago
NHS rapid policy statement on Tocilizumab for GCA during the Covid-19 pandemic
Tocilizumab
has been a life-saver for me, and since March I have been on no other medication whatsoever (after 3 terrible years on prednisolone).
Tocilizumab
has been a life-saver for me, and since March I have been on no other medication whatsoever (after 3 terrible years on prednisolone).
Suzita76
in
PMRGCAuk
4 years ago
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Actemra querie
Hello Everyone, I saw my Rheumatologist today and she is a little concerned about my very low white blood cell count, (heading into neutropenia territory), and so she is changing my
tocilizumab
jabs to fortnightly.
Hello Everyone, I saw my Rheumatologist today and she is a little concerned about my very low white blood cell count, (heading into neutropenia territory), and so she is changing my
tocilizumab
jabs to fortnightly.
LemonZest11
in
PMRGCAuk
4 years ago
a bit confused
hi everyone, I am due to take my Amgevita injection on Friday morning, but due to it not working after 12 weeks my rheumy team has switched me to
tocilizumab
. I’m waiting for a call from the home team to start the new drug.
hi everyone, I am due to take my Amgevita injection on Friday morning, but due to it not working after 12 weeks my rheumy team has switched me to
tocilizumab
. I’m waiting for a call from the home team to start the new drug.
conniegraham
in
NRAS
4 years ago
Starting new treatment
Am having to come off Benepali as it's not working for me ..am going on
Tocilizumab
is anyone on it or know anything about it xx
Am having to come off Benepali as it's not working for me ..am going on
Tocilizumab
is anyone on it or know anything about it xx
Swimming20
in
NRAS
4 years ago
Better outcomes in severe COVID-19 patients administered interleukin-6 inhibitors early.
New research from Boston Medical Center found that patients experiencing severe COVID-19 symptoms had improved outcomes when administered an Interleukin-6 (IL6ri) inhibitor, sarilumab or
tocilizumab
, given to mediate severe systemic inflammatory responses.
New research from Boston Medical Center found that patients experiencing severe COVID-19 symptoms had improved outcomes when administered an Interleukin-6 (IL6ri) inhibitor, sarilumab or
tocilizumab
, given to mediate severe systemic inflammatory responses.
2greys
in
Lung Conditions Community Forum
4 years ago
My start on GCA
Again back on Prednisone 40mg and
Tocilizumab
162ml once a week. I'm now on the 20th day on Prednisone (lowering from 40mg to 25). Meanwhile I studied all possible causes of such a nasty disease. The causes are not known. Immunity is the "reason" behind it.
Again back on Prednisone 40mg and
Tocilizumab
162ml once a week. I'm now on the 20th day on Prednisone (lowering from 40mg to 25). Meanwhile I studied all possible causes of such a nasty disease. The causes are not known. Immunity is the "reason" behind it.
Hidden
in
PMRGCAuk
4 years ago
The Salt Room ...
I have been travelling quite well on 6 mgs of pred and
tocilizumab
jabs weekly and some girlfriends invited me to come along with them to “The Salt Room”. It sounded fab, described as a cure for all sorts but I am not an alternative healing girl but my friends are fun and I went along with them.
I have been travelling quite well on 6 mgs of pred and
tocilizumab
jabs weekly and some girlfriends invited me to come along with them to “The Salt Room”. It sounded fab, described as a cure for all sorts but I am not an alternative healing girl but my friends are fun and I went along with them.
LemonZest11
in
PMRGCAuk
4 years ago
After Tocilizumab what next?
Has anyone completed their year on
Tocilizumab
for GCA? Were you then prescribed a 'step down' medication for six months, such as low dose Methotrexate, to follow? I'd be pleased if you could give me any information, I'm intolerant to so many medications. Best wishes everyone.
Has anyone completed their year on
Tocilizumab
for GCA? Were you then prescribed a 'step down' medication for six months, such as low dose Methotrexate, to follow? I'd be pleased if you could give me any information, I'm intolerant to so many medications. Best wishes everyone.
Katiecatweazel
in
PMRGCAuk
4 years ago
Drug That Calms 'Cytokine Storm' Linked to Lower Risk of Death Among COVID-19 Patients on Ventilators.
The lower risk of death in patients who received intravenous
tocilizumab
happened despite the fact that they also had twice the risk of developing an additional infection, on top of the novel coronavirus.
The lower risk of death in patients who received intravenous
tocilizumab
happened despite the fact that they also had twice the risk of developing an additional infection, on top of the novel coronavirus.
2greys
in
Lung Conditions Community Forum
4 years ago
An update on my tocilizumab experience.
Hello Everyone, from Downunder, I have now had my 12th jab of
tocilizumab
and my inflammatory markers have reduced to “normal” levels. I feel strong, full of energy and mentally positive for the first time in some months.
Hello Everyone, from Downunder, I have now had my 12th jab of
tocilizumab
and my inflammatory markers have reduced to “normal” levels. I feel strong, full of energy and mentally positive for the first time in some months.
LemonZest11
in
PMRGCAuk
4 years ago
My excellent Rheumatologist
I opted to go ahead with
Tocilizumab
and really hope this is the drug that is going to make me feel better and turn my life around. I have had R.A. for over 20 years but the last 18 months have been pure hell. I had my bloods taken and shown how to do the new injection.
I opted to go ahead with
Tocilizumab
and really hope this is the drug that is going to make me feel better and turn my life around. I have had R.A. for over 20 years but the last 18 months have been pure hell. I had my bloods taken and shown how to do the new injection.
Knit12
in
NRAS
4 years ago
New to biologics
I'm about to take delivery of my first dose of
tocilizumab
, it's also my first biologic. Nothing else has worked for me so I'm feeling a bit apprehensive. Could anyone tell me about their experiences with this drug please?
I'm about to take delivery of my first dose of
tocilizumab
, it's also my first biologic. Nothing else has worked for me so I'm feeling a bit apprehensive. Could anyone tell me about their experiences with this drug please?
Bluepegasus
in
NRAS
4 years ago
Less than satisfactory telephone consultation
He came back to say they wanted me to take it so that when I come off
tocilizumab
after a year I will have the methotrexate to keep the inflammation controlled.
He came back to say they wanted me to take it so that when I come off
tocilizumab
after a year I will have the methotrexate to keep the inflammation controlled.
Devoid
in
PMRGCAuk
4 years ago
How do you tell the difference between the pain from RA joint damage and the pain from RA being active/having a flare?
I am due to start on
Tocilizumab
in the next two weeks after a tough few months of just being on Sulfa and Hydroxy (MTX caused me lots of issues so I had to stop it).
I am due to start on
Tocilizumab
in the next two weeks after a tough few months of just being on Sulfa and Hydroxy (MTX caused me lots of issues so I had to stop it).
JoWa
in
NRAS
4 years ago
GCA Strange symptoms
Was started on 40 mg due to osteoporosis and tapered down from December 2019 to now currently on 8mg ( was down to 6mg but symptoms of pressure and pain came back so increased to 8mg) also started
Tocilizumab
in Feb 2020 injection 1x weekly. Thanks for reading
Was started on 40 mg due to osteoporosis and tapered down from December 2019 to now currently on 8mg ( was down to 6mg but symptoms of pressure and pain came back so increased to 8mg) also started
Tocilizumab
in Feb 2020 injection 1x weekly. Thanks for reading
A1430
in
PMRGCAuk
4 years ago
Members' magazine NewsWire published this week
There's a super useful article on tapering steroids (thank you to PMRPro for writing that), Dr Sarah Mackie answers a members question, latest research, a member's experience of
Tocilizumab
...and much more.
There's a super useful article on tapering steroids (thank you to PMRPro for writing that), Dr Sarah Mackie answers a members question, latest research, a member's experience of
Tocilizumab
...and much more.
Fran_Benson
Partner
in
PMRGCAuk
4 years ago
Tocilizumab injection vs infusion
I was on
tocilizumab
infusions until last month but was switched to injections because of COVID. Have any of you found the injections don’t work as well as infusions? I’ve found I am getting flare ups now and I’ve done the injection for two weeks but the infusions I didn’t have a flare up at all.
I was on
tocilizumab
infusions until last month but was switched to injections because of COVID. Have any of you found the injections don’t work as well as infusions? I’ve found I am getting flare ups now and I’ve done the injection for two weeks but the infusions I didn’t have a flare up at all.
PM193
in
NRAS
4 years ago
Repurposed drug shows promise for treating COVID-19 inflammation.
The team initially gave the drug,
tocilizumab
, to the most severely ill COVID-19 patients — specifically, those experiencing a dangerous immune response known as a “cytokine storm” — and it appeared to improve survival rates, especially among patients requiring mechanical ventilation.
The team initially gave the drug,
tocilizumab
, to the most severely ill COVID-19 patients — specifically, those experiencing a dangerous immune response known as a “cytokine storm” — and it appeared to improve survival rates, especially among patients requiring mechanical ventilation.
2greys
in
Lung Conditions Community Forum
4 years ago
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