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tocilizumab for gpa?
hi all, my wife was diagnosed with gpa almost five years ago which seems to be rumbling on and has been refused funding for rituximab but has been told she can have tocilizumab. have any of you had treatment with this drug for small and medium vessel vasculitis and with what results as most of the
hi all, my wife was diagnosed with gpa almost five years ago which seems to be rumbling on and has been refused funding for rituximab but has been told she can have tocilizumab. have any of you had treatment with this drug for small and medium vessel vasculitis and with what results as most of the
roobub
in
Vasculitis UK
8 years ago
Problem
After four months of Chlorambucil th with Allopurinol,my Alc is 6.8,Monocyt 29(1.5-11.5),PLT 117.But my lymph nodes have not decreased in size at all.In Belgrade,the lateste private Ultrasound has discovered many enlarged lymh nodes.In abdomen:in hillus hepatis 42x28mm and three nodes as conglomerat
After four months of Chlorambucil th with Allopurinol,my Alc is 6.8,Monocyt 29(1.5-11.5),PLT 117.But my lymph nodes have not decreased in size at all.In Belgrade,the lateste private Ultrasound has discovered many enlarged lymh nodes.In abdomen:in hillus hepatis 42x28mm and three nodes as conglomerat
Name-1
in
CLL Support
8 years ago
For those with vasculitis AND pain in the stomach
Hi all, I recently have been undergoing tests to get a specific diagnosis of GPA/Wegeners & have been told that I do have a generalise ANCA positive small cell vasculitis but that we need to be specific and to rule out ALL other problems or possibilities so that I can be treated with cyclophosphamide
Hi all, I recently have been undergoing tests to get a specific diagnosis of GPA/Wegeners & have been told that I do have a generalise ANCA positive small cell vasculitis but that we need to be specific and to rule out ALL other problems or possibilities so that I can be treated with cyclophosphamide
Jools52
in
Vasculitis UK
8 years ago
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Can anyone help
Hi I'm a newbie I have had non Hodgkin's lymphoma 2004, 2013, 2015 I am now nearly half way through a rituximab maintenance programme and have noticed how much weight I seem to be putting on around my middle and cannot shift it no matter what I do. it's really starting to affect my mental health. Can
Hi I'm a newbie I have had non Hodgkin's lymphoma 2004, 2013, 2015 I am now nearly half way through a rituximab maintenance programme and have noticed how much weight I seem to be putting on around my middle and cannot shift it no matter what I do. it's really starting to affect my mental health. Can
Ladyjay56
in
The Australian Sjögren's Syndrome Association
8 years ago
Rituximab
Hi all, hope you are all having a better day. I had another Rituximab infusion yesterday which went well. A little tired and a couple of odd hot flushes later in the evening. The funny thing was one side of my face was red hot and the other side cool, chest red hot but fine today. Anyone else had odd
Hi all, hope you are all having a better day. I had another Rituximab infusion yesterday which went well. A little tired and a couple of odd hot flushes later in the evening. The funny thing was one side of my face was red hot and the other side cool, chest red hot but fine today. Anyone else had odd
Hidden
in
Vasculitis UK
8 years ago
The unspeakable side effects of a bit of chemo ( bums and faries)
Well, what can I say... Recovering well from the trauma of the first round of FCR BUT now learning that it's not all plain sailing... Having had the most horrendous diarrhoea last week... Sorry for graphic details .... Which was rancid and bright yellow ... Like piccalilli ... I now have the sorest
Well, what can I say... Recovering well from the trauma of the first round of FCR BUT now learning that it's not all plain sailing... Having had the most horrendous diarrhoea last week... Sorry for graphic details .... Which was rancid and bright yellow ... Like piccalilli ... I now have the sorest
Bethan49
in
CLL Support
8 years ago
Cyclophosphamide for the elderly
My elderly mother was recently diagnosed with CLL. At that time (beginning April 2016) the associated acute condition was haemolysis which had already reduced her red blood count to the mid 40s. She was given transfusions and steroids. She responded well and was later discharged and the dose of steroids
My elderly mother was recently diagnosed with CLL. At that time (beginning April 2016) the associated acute condition was haemolysis which had already reduced her red blood count to the mid 40s. She was given transfusions and steroids. She responded well and was later discharged and the dose of steroids
nigeldodd
in
CLL Support
8 years ago
MY SENSE OF HUMOUR TOOK TO ITS HEELS AND RAN AS FAST AS IT COULD!!!!
Well last Friday was th first round of FCR. I felt quite positive, put on make up and a nice Lacey top to go to the party . All the staff were amazing, loads of reassurance and info... I was ready to go. Took the pills. Fine. Waited to start the infusion and was still quite jovial even though I did
Well last Friday was th first round of FCR. I felt quite positive, put on make up and a nice Lacey top to go to the party . All the staff were amazing, loads of reassurance and info... I was ready to go. Took the pills. Fine. Waited to start the infusion and was still quite jovial even though I did
Bethan49
in
CLL Support
8 years ago
Wegeners or periodic fever syndrome ? Help please
Hi good people, I have been going through the various and varied, intrusive tests to try and get a definitive diagnosis and my rheumatologist, Dr Harsha Gunawardena, has said that I have all the markers present for a diagnosis of Wegeners AKA GPA but the latest tests have been for what they call periodic
Hi good people, I have been going through the various and varied, intrusive tests to try and get a definitive diagnosis and my rheumatologist, Dr Harsha Gunawardena, has said that I have all the markers present for a diagnosis of Wegeners AKA GPA but the latest tests have been for what they call periodic
Jools52
in
Vasculitis UK
8 years ago
Holiday and very low count
Hi there, I posted a few week's ago to say I was going through the latest treatment of rituximab. Well last treatment was two week's ago and count is still at 2, though I know it can take a while. The thing is we are meant to be going abroad in 4 weeks to Kefalonia. My consultant didn't really answer
Hi there, I posted a few week's ago to say I was going through the latest treatment of rituximab. Well last treatment was two week's ago and count is still at 2, though I know it can take a while. The thing is we are meant to be going abroad in 4 weeks to Kefalonia. My consultant didn't really answer
Caro40
in
ITP Support Association
8 years ago
NW Scotland sunsets and a bit of knee progress
This is what we saw when we looked up from the news at 10.30 the other night, quite amazing. Rather gaudy! I've had my post op and they seemed fine, but stressed that I should not push myself too much just stay within my comfort zone. I have had quite a bit of RA inflammation despite the rituximab infusions
This is what we saw when we looked up from the news at 10.30 the other night, quite amazing. Rather gaudy! I've had my post op and they seemed fine, but stressed that I should not push myself too much just stay within my comfort zone. I have had quite a bit of RA inflammation despite the rituximab infusions
cathie
in
NRAS
8 years ago
So the party is just about to start!
Just to let you all know that after my appointment in Tuesday I begin FCR on Friday....tomorrow!! I was initially elated as previously have gone through the process to start chemo and then it's been decided to keep me on W&W . I now feel nervous and reality is hitting...did my last day at work
Just to let you all know that after my appointment in Tuesday I begin FCR on Friday....tomorrow!! I was initially elated as previously have gone through the process to start chemo and then it's been decided to keep me on W&W . I now feel nervous and reality is hitting...did my last day at work
Bethan49
in
CLL Support
8 years ago
ITP Spleen removal
So, I was diagnosed with ITP October 2014. Ever since I have had a single figure platelet count, proving non responsive to pred, IVIG, elmotrobag, romniplostim, rituximab, MMF. My options now are to have my spleen removed. I have requested an indium scan but been told that I do not have enough platelets
So, I was diagnosed with ITP October 2014. Ever since I have had a single figure platelet count, proving non responsive to pred, IVIG, elmotrobag, romniplostim, rituximab, MMF. My options now are to have my spleen removed. I have requested an indium scan but been told that I do not have enough platelets
Katewag
in
ITP Support Association
8 years ago
Hamster ovary?
Just thought I would share this interesting and amusing fact. Just had my very first rituximab infusion and second next week. I am the type who has to find out about everything I put in my body and have discovered that this drug is made from Chinese hamster ovary! It is fascinating stuff. This drug
Just thought I would share this interesting and amusing fact. Just had my very first rituximab infusion and second next week. I am the type who has to find out about everything I put in my body and have discovered that this drug is made from Chinese hamster ovary! It is fascinating stuff. This drug
Cathy777
in
NRAS
8 years ago
Flares???
How long do Sjogrens flares usually last . My glands have gone up again my stomach is upset and I ache all over. When I was first diagnosed I had a flare that lasted for many months , I've had rituximab infusion and I've improved but I had a couple of 4-5 day episodes of nausea pains and exhaustion in
How long do Sjogrens flares usually last . My glands have gone up again my stomach is upset and I ache all over. When I was first diagnosed I had a flare that lasted for many months , I've had rituximab infusion and I've improved but I had a couple of 4-5 day episodes of nausea pains and exhaustion in
weathervane
in
The Australian Sjögren's Syndrome Association
8 years ago
ITP recurred after five years: 2nd round of Rituximab Or Homeopath Or Anything else??
Hello everyone! My father (61 yrs old from Chhattisgarh, India) was diagnosed with ITP five years ago. His platelet counts went down to 7000. And then he was treated with the regular course of Rituximab at Sir Gangaram Hospital, New Delhi. Since then his platelet counts were hanging around 30-40K. But
Hello everyone! My father (61 yrs old from Chhattisgarh, India) was diagnosed with ITP five years ago. His platelet counts went down to 7000. And then he was treated with the regular course of Rituximab at Sir Gangaram Hospital, New Delhi. Since then his platelet counts were hanging around 30-40K. But
Varenya
in
ITP Support Association
8 years ago
Chronic itp. Latest treatment is rituximab
Hi all, I was diagnosed with itp in July last year and wrote a couple of posts at the time. Sorry haven't been in touch for sometime; it was greatly reassuring to talk to other people about their experiences at the time and people were very kind. It's fair to say it's been a bit of a roller coaster ride
Hi all, I was diagnosed with itp in July last year and wrote a couple of posts at the time. Sorry haven't been in touch for sometime; it was greatly reassuring to talk to other people about their experiences at the time and people were very kind. It's fair to say it's been a bit of a roller coaster ride
Caro40
in
ITP Support Association
8 years ago
Sero negative, what works?
I have taken the plunge, refused Rituximab and asked to change hospitals. Nothing has worked for two years and as I can never get through to anyone to talk about my issues and pain (short of staff) So I am moving. Has anyone been prescribed Rituximab if they are sero negative? My reading tells me is
I have taken the plunge, refused Rituximab and asked to change hospitals. Nothing has worked for two years and as I can never get through to anyone to talk about my issues and pain (short of staff) So I am moving. Has anyone been prescribed Rituximab if they are sero negative? My reading tells me is
LesBev
in
NRAS
8 years ago
Rituximab infusion
Hi all, I survived the Rituximab infusion which I had on Friday 27th May 2016. It took about 7 hours all in all. It was Painless and I wasn't as bored as I thought I'd be. As you are very sleepy from the piriton as it's a very large dose. I seemed to sale through the first 4 hours. But then had slight
Hi all, I survived the Rituximab infusion which I had on Friday 27th May 2016. It took about 7 hours all in all. It was Painless and I wasn't as bored as I thought I'd be. As you are very sleepy from the piriton as it's a very large dose. I seemed to sale through the first 4 hours. But then had slight
sarah1967
in
NRAS
8 years ago
Tocilizumab - looks like it is working
Had first infusion last Thursday, this was after having Rituximab late Feb then early March. On Friday I helped my daughter move into her own flat, hauled boxes, went up and down stairs, Saturday went out for a lovely lunch with son and a drive down the stunning Ayrshire coast. Sunday went north to
Had first infusion last Thursday, this was after having Rituximab late Feb then early March. On Friday I helped my daughter move into her own flat, hauled boxes, went up and down stairs, Saturday went out for a lovely lunch with son and a drive down the stunning Ayrshire coast. Sunday went north to
Chezis21
in
NRAS
8 years ago
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