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Rituximab
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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
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
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
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Foot and heel problems
I'm already having regular
Rituximab
infusions and Methotrexate and prednisone...running out of options after trying quite a few other biologics etc. Thanks for your ideas :-)
I'm already having regular
Rituximab
infusions and Methotrexate and prednisone...running out of options after trying quite a few other biologics etc. Thanks for your ideas :-)
Talmalmo
in
NRAS
6 years ago
Rituximab and heightened histamine/allergic reaction? Or just the soya yoghurts I ate ?
Anyone else ever had an allergic hives reaction to soya products whilst on
Rituximab
? I was worried that
Rituximab
has caused this reaction but my rheumy nurse phoned me and said it isn't that as it's never happened before and would have done the first of the recent duo, and didn't!
Anyone else ever had an allergic hives reaction to soya products whilst on
Rituximab
? I was worried that
Rituximab
has caused this reaction but my rheumy nurse phoned me and said it isn't that as it's never happened before and would have done the first of the recent duo, and didn't!
NeonkittyUK
in
NRAS
6 years ago
Probable discectomy☹️☹️
My problem is i was due to have
rituximab
infusion on the 18th of February but ive found out it is delayed until 27th of April. Im getting the op done privately hopefully so if I get it done soon maybe early March will that work with the
rituximab
.
My problem is i was due to have
rituximab
infusion on the 18th of February but ive found out it is delayed until 27th of April. Im getting the op done privately hopefully so if I get it done soon maybe early March will that work with the
rituximab
.
weathervane
in
NRAS
6 years ago
FLAIR Trial allocated Ibrutinib and Rituximab any advice?
Hi just heard I have been allocated the Ibrutinib and
Rituximab
arm on the FLAIR trial today. I will be starting very soon. Anyone out there been on this arm of the trial or are currently on it? I would welcome any advice from anyone. Ann
Hi just heard I have been allocated the Ibrutinib and
Rituximab
arm on the FLAIR trial today. I will be starting very soon. Anyone out there been on this arm of the trial or are currently on it? I would welcome any advice from anyone. Ann
annmcgowan
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
Hi I am new to Health Unlocked.
Had RA since 1992,tried lots of meds some good but stopped working.Am on Methotrexate,Folic Acid and
Rituximab
infusions ok at the moment. Most of my joints have mechanical damage, some replaced or fused. I lost jobs on Health & Safety grounds & had to stop work in 2010.
Had RA since 1992,tried lots of meds some good but stopped working.Am on Methotrexate,Folic Acid and
Rituximab
infusions ok at the moment. Most of my joints have mechanical damage, some replaced or fused. I lost jobs on Health & Safety grounds & had to stop work in 2010.
Backy
in
NRAS
6 years ago
Rituximab infusion
Had my first infusion of two today. I have had two previous sets. I was ok previously but today when I finished my pulse rate was high and they would not let me go home. Eventually, they sent me for an ECG. The consultant checked it and let me go home two hours after I had finished the infusion. They
Had my first infusion of two today. I have had two previous sets. I was ok previously but today when I finished my pulse rate was high and they would not let me go home. Eventually, they sent me for an ECG. The consultant checked it and let me go home two hours after I had finished the infusion. They
Ellieellie
in
NRAS
6 years ago
Bad day.
Had
rituximab
infusion last week and had problems with heart rate. Second one next week. Having a flare up that my right hand is itching so much I have broken the skin and drawn blood with scratching. This is my third cycle of
Rituximab
. Have asked them to give me it at a slower rate next week.
Had
rituximab
infusion last week and had problems with heart rate. Second one next week. Having a flare up that my right hand is itching so much I have broken the skin and drawn blood with scratching. This is my third cycle of
Rituximab
. Have asked them to give me it at a slower rate next week.
Ellieellie
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
POTs/ dysautonomia/ autonomic nervous system issues anyone??
I have been struggling with various lupus symptoms recently, had second
rituximab
last week and lots of palpitations/ dizziness. I was in my GPs last week standing in the queue (standing always makes me much dizzier/ lightheaded than walking) and blacked out.
I have been struggling with various lupus symptoms recently, had second
rituximab
last week and lots of palpitations/ dizziness. I was in my GPs last week standing in the queue (standing always makes me much dizzier/ lightheaded than walking) and blacked out.
Melba1
in
LUPUS UK
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
First rituximab infusion
not been good at all 😢 feels like I’m ill every day 😢 actually fed up listening to myself moaning 😜 god knows how my hubby feels , have had kenalog injections into finger joints 8 in total on 1 day pain was horrific later at night , but now 2 weeks on it’s done nothing 😢 had my first infusion of
rituximab
not been good at all 😢 feels like I’m ill every day 😢 actually fed up listening to myself moaning 😜 god knows how my hubby feels , have had kenalog injections into finger joints 8 in total on 1 day pain was horrific later at night , but now 2 weeks on it’s done nothing 😢 had my first infusion of
rituximab
Harrisgran1
in
LUPUS UK
6 years ago
So exhausted but don’t want to go to bed!
- but still hopeful
Rituximab
will kick in in the next few weeks - such a long journey waiting for a lovely destination! x
- but still hopeful
Rituximab
will kick in in the next few weeks - such a long journey waiting for a lovely destination! x
TTCC
in
NRAS
6 years ago
Rituximab
Just wondering peoples experiences- not of the actual infusion - (I’ve already had mine 1and 3 weeks ago) but when it actually started working. I know it is a 2 week to 3 month wait to see if it works average 8-10 weeks so it’s not about when it started working but the HOW it started working for people
Just wondering peoples experiences- not of the actual infusion - (I’ve already had mine 1and 3 weeks ago) but when it actually started working. I know it is a 2 week to 3 month wait to see if it works average 8-10 weeks so it’s not about when it started working but the HOW it started working for people
TTCC
in
NRAS
6 years ago
Hi! Just joining.
My neurologist wants to put me on
Rituximab
. Anyone have experience with it? Side effects?
My neurologist wants to put me on
Rituximab
. Anyone have experience with it? Side effects?
pihokken
in
My MSAA Community
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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