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First. FCR treatment
Happy to report first day (of two) of treatment done and feel fine. Bit od a sticky moment half an hour in, feeling palpitations and breathless. Nurses think this was due to steroids I’d been given initially to counter any adverse reaction. After ECG and doctor checking me over, treatment continued
Happy to report first day (of two) of treatment done and feel fine. Bit od a sticky moment half an hour in, feeling palpitations and breathless. Nurses think this was due to steroids I’d been given initially to counter any adverse reaction. After ECG and doctor checking me over, treatment continued
Mandy56
in
CLL Support
6 years ago
Rash?! Sun, drugs or something else??
Hi all, I’m being treated for GPA with rituximab infusions and steroids, currently 20mg a day down from 60mg a day. I’ve developed a rash that started on my face and neck and is now on the back of my hands but nowhere else. My face seems to have died down a bit now. Still a bit red but looks more like
Hi all, I’m being treated for GPA with rituximab infusions and steroids, currently 20mg a day down from 60mg a day. I’ve developed a rash that started on my face and neck and is now on the back of my hands but nowhere else. My face seems to have died down a bit now. Still a bit red but looks more like
Wengle82
in
Vasculitis UK
6 years ago
Hello my name is Donna. 56 yrs old, CLL diagnosis 2002, started FCR in Jan.
I was looking online for info on neurological side effects of FCR because I keep feeling "brain zaps". I found this page and signed up. So anyone else experience thos kind of side effect? I finished round 4 3 weeks ago and the symptoms are lessening a bit, but in the evening I still feel off on the
I was looking online for info on neurological side effects of FCR because I keep feeling "brain zaps". I found this page and signed up. So anyone else experience thos kind of side effect? I finished round 4 3 weeks ago and the symptoms are lessening a bit, but in the evening I still feel off on the
Hidden
in
CLL Support
6 years ago
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Rituximab
Hi I've been on steroids and other lupus medication for 3 years now but no change in my active lupus and when doctor try to reduce steroids I end up with bad flare ups and in hospital. They now want to try me on this new medication 'Rituximab' infusion treatment. I was just wondering if anyone else has
Hi I've been on steroids and other lupus medication for 3 years now but no change in my active lupus and when doctor try to reduce steroids I end up with bad flare ups and in hospital. They now want to try me on this new medication 'Rituximab' infusion treatment. I was just wondering if anyone else has
Charl1503
in
LUPUS UK
6 years ago
Drug Induced Lupus?
Has anybody been diagnosed with this? I have had Sero positive RA for nearly 20 years, & have suddenly broken out in pinky red blotches all over my torso. They don't hurt or itch, & I don't have the Malar rash on my face. I'm on Rituximab infusions, & my Rheumatologist discounted that as the cause So
Has anybody been diagnosed with this? I have had Sero positive RA for nearly 20 years, & have suddenly broken out in pinky red blotches all over my torso. They don't hurt or itch, & I don't have the Malar rash on my face. I'm on Rituximab infusions, & my Rheumatologist discounted that as the cause So
AgedCrone
in
LUPUS UK
6 years ago
Starting FCR on Monday
After lots of ups and downs, I am on the FLAIR trial and starting FCR on Monday. I’ve tapped into a wealth of advice here, but would welcome any pearls of wisdom anyone can offer. I do have a question though - does the treatment get worse the longer into it you go? I was hoping to book a holiday in
After lots of ups and downs, I am on the FLAIR trial and starting FCR on Monday. I’ve tapped into a wealth of advice here, but would welcome any pearls of wisdom anyone can offer. I do have a question though - does the treatment get worse the longer into it you go? I was hoping to book a holiday in
Mandy56
in
CLL Support
6 years ago
What should I ask?
Going on Tuesday for my second opinion @Moffitt Center in Tampa. I was there last month for initial consultation. They will go over blood work/findings and recommend which treatment. I have had CLL for over 11 years. Never staged. I have list of questions if they recommend FCR chemo and list if it's
Going on Tuesday for my second opinion @Moffitt Center in Tampa. I was there last month for initial consultation. They will go over blood work/findings and recommend which treatment. I have had CLL for over 11 years. Never staged. I have list of questions if they recommend FCR chemo and list if it's
GMa27
in
CLL Support
6 years ago
RITUXIMAB
Anyone had this infusion?? Nervous, but joints so bad need something else. Start in 3weeks, so gotta make my mind up soon. Side effects worry me the most Thanks x
Anyone had this infusion?? Nervous, but joints so bad need something else. Start in 3weeks, so gotta make my mind up soon. Side effects worry me the most Thanks x
Kjmarsh
in
LUPUS UK
6 years ago
Methetrexate and rituximab
I haven't been on in ages and wondering if anyone is on rituximab without methetrexate. I never ever felt methetrexate helped me even when I was on a high dose. Now I am on rituximab and I have been told I must take mtx along with it or else I will have to come off it. Surely this would be unfair
I haven't been on in ages and wondering if anyone is on rituximab without methetrexate. I never ever felt methetrexate helped me even when I was on a high dose. Now I am on rituximab and I have been told I must take mtx along with it or else I will have to come off it. Surely this would be unfair
mille
in
NRAS
6 years ago
New positive feedback Rituximab
Hi 👋 all you RA-ers. Just looking for updated positive feedback on Rituximab. I Have been on Embrel for 6/7 years which worked wonders but has not started to lose efficacy. I am also in sulphasalazine which has also been excellent..my Rheumatologist has suggested Rituximab as she says it’s the next
Hi 👋 all you RA-ers. Just looking for updated positive feedback on Rituximab. I Have been on Embrel for 6/7 years which worked wonders but has not started to lose efficacy. I am also in sulphasalazine which has also been excellent..my Rheumatologist has suggested Rituximab as she says it’s the next
Tessthomy
in
NRAS
6 years ago
Zarzio shots causing severe horrendous pain- any proven help for muscle and bone issues?
On and off neutropenic for two months now and now taking zarzio shots every other day but causing major debilitating pain in lower back to hips and shooting down both sides of legs making me bedridden... I’m 49 yrs old and don’t wanna keep taking pain meds . The FCR didn’t work on me and nodes are
On and off neutropenic for two months now and now taking zarzio shots every other day but causing major debilitating pain in lower back to hips and shooting down both sides of legs making me bedridden... I’m 49 yrs old and don’t wanna keep taking pain meds . The FCR didn’t work on me and nodes are
Luckyliss
in
CLL Support
6 years ago
What is the best first-line treatment combination for CLL?
I’m taking the liberty of cross posting this post I wrote from the UK CLL Facebook group. I’m trying to get my own head round what are the best first line treatments for CLL. Not least because I know that I’m obviously quite likely to need treatment at some point. I believe in the power of many
I’m taking the liberty of cross posting this post I wrote from the UK CLL Facebook group. I’m trying to get my own head round what are the best first line treatments for CLL. Not least because I know that I’m obviously quite likely to need treatment at some point. I believe in the power of many
AdrianUK
in
CLL Support
6 years ago
Evidence used for my decision process with (IMO)
In answer to your questions (continued) I have no insurance (for the last two years), so I keep lines of communication open with current researchers and practitioners in the field. occasionally I have vetted a specialist or two and will make an appointment to ask questions about current research. my
In answer to your questions (continued) I have no insurance (for the last two years), so I keep lines of communication open with current researchers and practitioners in the field. occasionally I have vetted a specialist or two and will make an appointment to ask questions about current research. my
Robgump
in
CLL Support
6 years ago
Rituximab
Hello everyone I have lupus and tried lots of different treatments my consultant has now decided on Rituximab as the next step anyone out there who has had this if so could you give me your opinion
Hello everyone I have lupus and tried lots of different treatments my consultant has now decided on Rituximab as the next step anyone out there who has had this if so could you give me your opinion
Motherof4withlupus
in
LUPUS UK
6 years ago
Rituximab
Hi all i was diagnosed with ANCA Vasculitis which left me with Stage 3/4 CKD and following other treatments and medication i have been given rituximab 3 times now over 18 months and due another batch in June this year.I am 67 and recentley had to have a Tumor removed from my bladder this week which was
Hi all i was diagnosed with ANCA Vasculitis which left me with Stage 3/4 CKD and following other treatments and medication i have been given rituximab 3 times now over 18 months and due another batch in June this year.I am 67 and recentley had to have a Tumor removed from my bladder this week which was
Keithtim10
in
Vasculitis UK
6 years ago
Evidence used for my decision process with (IMO)
In answer to your questions (continued) I have no insurance (for the last two years), so I keep lines of communication open with current researchers and practitioners in the field. occasionally I have vetted a specialist or two and will make an appointment to ask questions about current research. my
In answer to your questions (continued) I have no insurance (for the last two years), so I keep lines of communication open with current researchers and practitioners in the field. occasionally I have vetted a specialist or two and will make an appointment to ask questions about current research. my
Robgump
in
CLL Support
6 years ago
Rituximab infusion 1 so far so good
Hi everyone just got back from hospital after my first infusion of Rituximab. All went well no hiccups thank goodness. Started Ibrutinib the day before. I know I am not out of the wood reaction wise yet but so far so good.🤞for the road ahead. Thank you to everyone on this site who have helped me to
Hi everyone just got back from hospital after my first infusion of Rituximab. All went well no hiccups thank goodness. Started Ibrutinib the day before. I know I am not out of the wood reaction wise yet but so far so good.🤞for the road ahead. Thank you to everyone on this site who have helped me to
annmcgowan
in
CLL Support
6 years ago
Evidence used for my decision process with (IMO)
In answer to your questions (continued) I have no insurance (for the last two years), so I keep lines of communication open with current researchers and practitioners in the field. occasionally I have vetted a specialist or two and will make an appointment to ask questions about current research. my
In answer to your questions (continued) I have no insurance (for the last two years), so I keep lines of communication open with current researchers and practitioners in the field. occasionally I have vetted a specialist or two and will make an appointment to ask questions about current research. my
Robgump
in
CLL Support
6 years ago
Infusion
Ok so I had my Rituximab infusion and had problems with heart rate. Was not given the second part due to elevate blood pressure and got told to see my Dr. Saw Dr who put me on Ramapril. When I asked about side effects he only mentioned a dry cough. Have only been on it for 6 days and suffering nausea
Ok so I had my Rituximab infusion and had problems with heart rate. Was not given the second part due to elevate blood pressure and got told to see my Dr. Saw Dr who put me on Ramapril. When I asked about side effects he only mentioned a dry cough. Have only been on it for 6 days and suffering nausea
Ellieellie
in
NRAS
6 years ago
Evidence used for my decision process with (IMO)
In answer to your questions (continued) I have no insurance (for the last two years), so I keep lines of communication open with current researchers and practitioners in the field. occasionally I have vetted a specialist or two and will make an appointment to ask questions about current research. my
In answer to your questions (continued) I have no insurance (for the last two years), so I keep lines of communication open with current researchers and practitioners in the field. occasionally I have vetted a specialist or two and will make an appointment to ask questions about current research. my
Robgump
in
CLL Support
6 years ago
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