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Hypogonadism and vasculitis + Rituximab
I had my 12 weekly depo injection of testosterone today and have my second infusion of the biosimilar Texan I think it’s called. I had a very weird experience this afternoon where I was out of it & was even talking about stuff that wasn’t happening and the better half calls it rubbish talk. I did ask
I had my 12 weekly depo injection of testosterone today and have my second infusion of the biosimilar Texan I think it’s called. I had a very weird experience this afternoon where I was out of it & was even talking about stuff that wasn’t happening and the better half calls it rubbish talk. I did ask
Balderick
in
Vasculitis UK
7 years ago
Chemo Side Effects FCR
Hi everyone! My dad is on his 4th round of what they call “aggressive chemo” for NHL. He is taking FCR with monthly infusions of antibodies,antibirala, antibiotics (to prevent shingles and pneumonia, as well as oral chemo and 7 days monthly of immune boosting injections. This round was particularly
Hi everyone! My dad is on his 4th round of what they call “aggressive chemo” for NHL. He is taking FCR with monthly infusions of antibodies,antibirala, antibiotics (to prevent shingles and pneumonia, as well as oral chemo and 7 days monthly of immune boosting injections. This round was particularly
Whitehouse_77
in
CLL Support
6 years ago
Increase in Lupus Symptoms
I was diagnosed in 2006 and for 2-3 year's it was quite rough. But then after getting rituximab infusion i was pretty much back to normal up until now 😞😞 in 2010 i had the infusion and been doing well for 7 year's. I still had random stomach upsets, GI problems, Migraines etc. About a month or two
I was diagnosed in 2006 and for 2-3 year's it was quite rough. But then after getting rituximab infusion i was pretty much back to normal up until now 😞😞 in 2010 i had the infusion and been doing well for 7 year's. I still had random stomach upsets, GI problems, Migraines etc. About a month or two
LifeAsALupie
in
LUPUS UK
7 years ago
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Venetoclax Plus Rituximab Is Superior to Bendamustine Plus Rituximab (Murano Study)
Today on the ASH 2017 Meeting, the results of the Murano Study were published: https://ash.confex.com/ash/2017/webprogram/Paper109076.html I was one of the 389 participants in this trial and off course I am very happy with the conclusion, demonstrating that treatment with VR resulted in outcomes superior
Today on the ASH 2017 Meeting, the results of the Murano Study were published: https://ash.confex.com/ash/2017/webprogram/Paper109076.html I was one of the 389 participants in this trial and off course I am very happy with the conclusion, demonstrating that treatment with VR resulted in outcomes superior
Korstiaan
in
CLL Support
7 years ago
Eye pain
Hi I have dermatomyositis, treated with rituximab 10 weekly but am recently- last few months - suffering severe eye pain anyone experiencing similar any treatment suggestions pain is excruciating at night ophthalmologist prescribed eye drops for dry eyes these do not work. Thanks in advance
Hi I have dermatomyositis, treated with rituximab 10 weekly but am recently- last few months - suffering severe eye pain anyone experiencing similar any treatment suggestions pain is excruciating at night ophthalmologist prescribed eye drops for dry eyes these do not work. Thanks in advance
Rsheppard
in
Myositis UK
7 years ago
“Yay I’m finally out of hospital!!”
After the last post of Bev in hospital basically learning to walk again - she was in rehab for 2 1/2 weeks - and came home this week. She has continued her exercise regime but after the 90 minute hospital rehab sessions in the morning and afternoon - she's taking it a bit easier at home. Still going
After the last post of Bev in hospital basically learning to walk again - she was in rehab for 2 1/2 weeks - and came home this week. She has continued her exercise regime but after the 90 minute hospital rehab sessions in the morning and afternoon - she's taking it a bit easier at home. Still going
Beverly
Administrator
in
The Australian Sjögren's Syndrome Association
7 years ago
Recent research
It's only an abstract but interesting nonetheless. Looking at the safety and efficacy of Rituximab in refractory SLE. https://academic.oup.com/rheumatology/advance-article-abstract/doi/10.1093/rheumatology/kex395/4688912
It's only an abstract but interesting nonetheless. Looking at the safety and efficacy of Rituximab in refractory SLE. https://academic.oup.com/rheumatology/advance-article-abstract/doi/10.1093/rheumatology/kex395/4688912
Hidden
in
LUPUS UK
7 years ago
Dark Urine with Imbruvica ?
Back in 09 learned I had stage 4 CLL & went through 6 mo of FCR chemo....all went well until Aug of 17 when my white count started rising 10k per month... in Nov I started Imbruvica & my swollen neck glands went down in the first week while my WBC rose 30k... for the last mo my WBC has been slowly
Back in 09 learned I had stage 4 CLL & went through 6 mo of FCR chemo....all went well until Aug of 17 when my white count started rising 10k per month... in Nov I started Imbruvica & my swollen neck glands went down in the first week while my WBC rose 30k... for the last mo my WBC has been slowly
emarine
in
CLL Support
7 years ago
Latest research into ANCA associated Vasculitis and Rituximab
Came across this online. It's the report of a clinical trial comparing regular Rituximab infusions for AAV with tailored regimes taking into account ANCA and B cell levels. https://ancavasculitisnews.com/2017/12/04/tailored-rituxan-regimens-in-anca-patients-show-no-signficant-impact-on-relapses-in-phase
Came across this online. It's the report of a clinical trial comparing regular Rituximab infusions for AAV with tailored regimes taking into account ANCA and B cell levels. https://ancavasculitisnews.com/2017/12/04/tailored-rituxan-regimens-in-anca-patients-show-no-signficant-impact-on-relapses-in-phase
Hidden
in
Vasculitis UK
7 years ago
2017 - Bright and Dark
Greeting All, Always lurking and reading posts. After 6 x FCR in March '14 I'm still plodding on and even though my Consultant appointments have narrowed to 6 Weeks apart, there's been many bright spells during 2017 - in particular, 1. Free Car Parking at the hospital. (Once paid £22 during FCR Treatment
Greeting All, Always lurking and reading posts. After 6 x FCR in March '14 I'm still plodding on and even though my Consultant appointments have narrowed to 6 Weeks apart, there's been many bright spells during 2017 - in particular, 1. Free Car Parking at the hospital. (Once paid £22 during FCR Treatment
Bribin
in
CLL Support
7 years ago
Sleep walking into trouble
I have had autoimmune haemolytic anaemia as a complication of CLL for three years, with two relapses after a few months off steroids. I've been on prednisolone for more than 18 of the last 36 months and the AIHA is now starting to become steroid refractory, with a higher dose needed to get any control
I have had autoimmune haemolytic anaemia as a complication of CLL for three years, with two relapses after a few months off steroids. I've been on prednisolone for more than 18 of the last 36 months and the AIHA is now starting to become steroid refractory, with a higher dose needed to get any control
charliegirl
in
CLL Support
7 years ago
Happy 2018... Choose your Pooh Bear Character!
Happy New year to you and all here! This forum becomes our sounding board, our counselling session, our font of knowledge, our diary to log and share our darkest thoughts, our laughter but most importantly our support. It's a while since I wrote on here but I still dip in constantly. I'm now just over
Happy New year to you and all here! This forum becomes our sounding board, our counselling session, our font of knowledge, our diary to log and share our darkest thoughts, our laughter but most importantly our support. It's a while since I wrote on here but I still dip in constantly. I'm now just over
Bethan49
in
CLL Support
7 years ago
Watch and wait is over
Hi all, I was diagnosed 3 years ago with CLL, I am now 53 yo and with wbc up and platelets down as well as swollen lymph nodes and enlarged spleen my Doctor has started me on treatments. I am going to Dana Farber and taking part of a study that combines Ibrutinib with standard FCR treatment. I will take
Hi all, I was diagnosed 3 years ago with CLL, I am now 53 yo and with wbc up and platelets down as well as swollen lymph nodes and enlarged spleen my Doctor has started me on treatments. I am going to Dana Farber and taking part of a study that combines Ibrutinib with standard FCR treatment. I will take
Mosaicgigi
in
CLL Support
7 years ago
stopped imbruvica
I was on imbruvica (3 pills 420) for about 3 months and CBC test came back better, however I got so sick my doctor stopped me that was about 10 weeks ago and my CBC tests looked almost normal. he wants me to try one pill a day but there is no way I am taking imbruvica again. I had chemo FCR in 2009
I was on imbruvica (3 pills 420) for about 3 months and CBC test came back better, however I got so sick my doctor stopped me that was about 10 weeks ago and my CBC tests looked almost normal. he wants me to try one pill a day but there is no way I am taking imbruvica again. I had chemo FCR in 2009
The_Eagle
in
CLL Support
7 years ago
Farewell Tocilizumab...hello Baricitinib
I was dagnosed with RD 3.5yrs ago, been on Enbrel, Rituximab and Tocilizumab. My last infusion was 4 weeks ago... Today I start new treatment. Baricitinib which is a JAK inhibitor. No more infusions. I take one tablet a day along with my weekly 20mg of MTX. I'll be having a hip replacement as
I was dagnosed with RD 3.5yrs ago, been on Enbrel, Rituximab and Tocilizumab. My last infusion was 4 weeks ago... Today I start new treatment. Baricitinib which is a JAK inhibitor. No more infusions. I take one tablet a day along with my weekly 20mg of MTX. I'll be having a hip replacement as
Chezis21
in
NRAS
7 years ago
Rituximab
The Rituximab saga began in 2004 when two oncologists noticed that Rituximab – a B-cell depleting drug often used in cancer – not only cured one of their patient’s cancer but eliminated their chronic fatigue syndrome (ME/CFS) as well. After two more ME/CFS patients responded similarly, they began their
The Rituximab saga began in 2004 when two oncologists noticed that Rituximab – a B-cell depleting drug often used in cancer – not only cured one of their patient’s cancer but eliminated their chronic fatigue syndrome (ME/CFS) as well. After two more ME/CFS patients responded similarly, they began their
readerlist
in
Ramsays Disease
7 years ago
Fcr started
First post after lots of reading on here. It has all been very helpful. I am male aged 66 diagnosed 4 years ago after hernia surgery If not for that I would not have found out until 5 months ago when I was admitted to hospital with anemia (heamoglobin of 6) received 4 units of blood initially followed
First post after lots of reading on here. It has all been very helpful. I am male aged 66 diagnosed 4 years ago after hernia surgery If not for that I would not have found out until 5 months ago when I was admitted to hospital with anemia (heamoglobin of 6) received 4 units of blood initially followed
Alex15alex
in
CLL Support
7 years ago
Rituximab - Biological Drugs
Hi. I have had RA for 12 years now and my consultant wants to put me on Rituximab. I am very concerned about the side effects of this drug, particularly as I have already had a heart attack linked to my RA. Does anyone have experience of this drug, good or bad, or are like me, worried about starting
Hi. I have had RA for 12 years now and my consultant wants to put me on Rituximab. I am very concerned about the side effects of this drug, particularly as I have already had a heart attack linked to my RA. Does anyone have experience of this drug, good or bad, or are like me, worried about starting
7stiff4days
in
NRAS
7 years ago
Rituximab again
Last Thursday I had my fourth of a two part course of Rituximab infusion along with oral Piriton and Paracetamol tablets. I started to sleep because of the effects of the the tablets. During the infusion I felt very hot and had to have a fan to cool me but my temperature was normal. I left the hospital
Last Thursday I had my fourth of a two part course of Rituximab infusion along with oral Piriton and Paracetamol tablets. I started to sleep because of the effects of the the tablets. During the infusion I felt very hot and had to have a fan to cool me but my temperature was normal. I left the hospital
Maureenpearl
in
LUPUS UK
7 years ago
ITP and hair loss (alopecia)
Has anyone else with ITP also suffered from hair loss ? I'm 60 years old, have been suffering from ITP for several years and was put on Eltrombopag (revolade, promacta) about 4 months ago. The drug has been the only thing that has resolved my ITP but a couple of days ago I found a large bald patch (larger
Has anyone else with ITP also suffered from hair loss ? I'm 60 years old, have been suffering from ITP for several years and was put on Eltrombopag (revolade, promacta) about 4 months ago. The drug has been the only thing that has resolved my ITP but a couple of days ago I found a large bald patch (larger
prudencepayes
in
ITP Support Association
7 years ago
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