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Bad rash after first CLL chemo.
Just started on a course of FCR 26 days ago I came out in a rash all over my body. It started a few days after my chemo. It is unbearable now and consultant says he has no idea why. Cannot start my next treatment due to this painful rash. I have tried different antihistamines HAs anyone else had
Just started on a course of FCR 26 days ago I came out in a rash all over my body. It started a few days after my chemo. It is unbearable now and consultant says he has no idea why. Cannot start my next treatment due to this painful rash. I have tried different antihistamines HAs anyone else had
Rugbyman13
in
CLL Support
7 years ago
CLL 11q del, CD38+ unmutated and my bumpy ride during the FCR treatment.
During the first infusion of
Rituximab
, I was under constant surveillance of a medical team with several MD, nurses and apparatus. This due to some very rare, but existing life threatening side effects of the preparate.
During the first infusion of
Rituximab
, I was under constant surveillance of a medical team with several MD, nurses and apparatus. This due to some very rare, but existing life threatening side effects of the preparate.
RemusTh
in
CLL Support
7 years ago
Hello, I'm new here but have had symptoms for many years
I'll be starting
Rituximab
shortly. What I'd like to ask you about is this; since about 1996, when I first had scleritis, and they found a +RF, I've had frequent periodic bouts of extreme tiredness and flu-like symptoms, when I was utterly debilitated and simply had to take to bed.
I'll be starting
Rituximab
shortly. What I'd like to ask you about is this; since about 1996, when I first had scleritis, and they found a +RF, I've had frequent periodic bouts of extreme tiredness and flu-like symptoms, when I was utterly debilitated and simply had to take to bed.
StormySeas
in
NRAS
7 years ago
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Knee pain at night
I haven't mentioned to rheumy yet as dont see her again until end of july for
rituximab
infusion. Best wishes ๐ธ๐ธ
I haven't mentioned to rheumy yet as dont see her again until end of july for
rituximab
infusion. Best wishes ๐ธ๐ธ
weathervane
in
NRAS
7 years ago
High fever as side effect of Ibrutinib ?
Hi, I'm new here and follow this blog with great interest. I had 6 cycles of FCR 5 years ago which gave me 5 years of a nice remission. For the last 2 years I am on monthly IVIG because of frequent pneumonias. Helped really good. Now my CLL has returned . 4 months ago a low grade fever started , about
Hi, I'm new here and follow this blog with great interest. I had 6 cycles of FCR 5 years ago which gave me 5 years of a nice remission. For the last 2 years I am on monthly IVIG because of frequent pneumonias. Helped really good. Now my CLL has returned . 4 months ago a low grade fever started , about
GIDI
in
CLL Support
7 years ago
Advice with starting FCR
After two years of wait and watch, I have to start treatment this week. Besides drinking lots of fluids what else do you recommend? What should I bring with me for these long treatments? I will be taking anti nausea and other medications to help reduce side effects. I am looking forward to saying
After two years of wait and watch, I have to start treatment this week. Besides drinking lots of fluids what else do you recommend? What should I bring with me for these long treatments? I will be taking anti nausea and other medications to help reduce side effects. I am looking forward to saying
Jemisavs5
in
CLL Support
7 years ago
Choices, choices!! FCR or Trial...?
So 8 years from diagnosis and a past year where I was no longer considering myself Superwoman who had inadvertently created the cure for the common cold...I've had all those missed coughs and colds now and even topped it off with sepsis, and managed to get one very angry tonsil through it all, that complained
So 8 years from diagnosis and a past year where I was no longer considering myself Superwoman who had inadvertently created the cure for the common cold...I've had all those missed coughs and colds now and even topped it off with sepsis, and managed to get one very angry tonsil through it all, that complained
AnjiP
in
CLL Support
7 years ago
FCR
Hello everyone! I am just finishing the 2nd cycle of FCR for my CLL diagnosed 2011. Must say it's not been at all bad ... so far anyway. No sickness at all but did get anti-sick tabs and anti virals, oh and also anti kidney and chest infection tabs. Only negs have been tiredness and some quite bad constipation
Hello everyone! I am just finishing the 2nd cycle of FCR for my CLL diagnosed 2011. Must say it's not been at all bad ... so far anyway. No sickness at all but did get anti-sick tabs and anti virals, oh and also anti kidney and chest infection tabs. Only negs have been tiredness and some quite bad constipation
bendintheroad1
in
CLL Support
7 years ago
Vacation
I have had CLL a couple of years now. I am a year and a half post FCR, and it has worked despite the fact that I am unmutated. I do tend to get infections a great deal, and IVIG helps tremendously. Here is my question. We are heading to Idaho for the lakes and mountains. I worry about infections
I have had CLL a couple of years now. I am a year and a half post FCR, and it has worked despite the fact that I am unmutated. I do tend to get infections a great deal, and IVIG helps tremendously. Here is my question. We are heading to Idaho for the lakes and mountains. I worry about infections
beanlake14
in
CLL Support
7 years ago
Rheumy nurse ๐๐๐
My husband has just booked a holiday in july and i had an awful thought that I could be called in for next
rituximab
infusion round the same date ๐คSo i phoned the nurse and she got back to me - my appointment was the date we flew off !!!! Sooo she told me to leave it with her.
My husband has just booked a holiday in july and i had an awful thought that I could be called in for next
rituximab
infusion round the same date ๐คSo i phoned the nurse and she got back to me - my appointment was the date we flew off !!!! Sooo she told me to leave it with her.
weathervane
in
LUPUS UK
7 years ago
Concerned or not to be concerned, that is the question....
I have now being diagnosed with: SLE - I have had two
Rituximab
infusions so far Alopeca Arthritis Anti Ro - unsure what this is DNA - again not sure what this is Migraines Malay rash APS - and I had an TIA. I was started immediately on Tinziparin injections All this from November.
I have now being diagnosed with: SLE - I have had two
Rituximab
infusions so far Alopeca Arthritis Anti Ro - unsure what this is DNA - again not sure what this is Migraines Malay rash APS - and I had an TIA. I was started immediately on Tinziparin injections All this from November.
LSurtees
in
LUPUS UK
7 years ago
Does Tinnitus drive you crazy? Or it it just me?
I have experienced varying degrees of tinnitus over the last decade or so. I may have had CLL for that period too (CLL diagnosed following pre-op assessment for prostate problem in Jan 2015 then 6 cycles FCR and 18 months remission) When I took medical advice (2004?) it was accompanied with dizziness
I have experienced varying degrees of tinnitus over the last decade or so. I may have had CLL for that period too (CLL diagnosed following pre-op assessment for prostate problem in Jan 2015 then 6 cycles FCR and 18 months remission) When I took medical advice (2004?) it was accompanied with dizziness
thelutondodger
in
CLL Support
7 years ago
New to APS and worried
I am also under Rheumatology at Chapel Allerton Hospital under prof Emery where I am currently having
Rituximab
infusions where I get constant mouth and nose thrush and also under neurologist again at chapel allerton under Dr Vittam so think I have a good specialised team.
I am also under Rheumatology at Chapel Allerton Hospital under prof Emery where I am currently having
Rituximab
infusions where I get constant mouth and nose thrush and also under neurologist again at chapel allerton under Dr Vittam so think I have a good specialised team.
LSurtees
in
Hughes Syndrome APS Forum
7 years ago
Nose Bleeds
I'm back in hospital tomorrow for my next
Rituximab
infusion, should I be concerned? Thank you in advance Linds
I'm back in hospital tomorrow for my next
Rituximab
infusion, should I be concerned? Thank you in advance Linds
LSurtees
in
LUPUS UK
7 years ago
Hot feet!
I'm on my 4th session FCR. I consider myself lucky has I have only really suffered with terrible nausea. However, I now have started to suffer with bad leg pains and neck pains, also the soles of my heat keep going really hot????
I'm on my 4th session FCR. I consider myself lucky has I have only really suffered with terrible nausea. However, I now have started to suffer with bad leg pains and neck pains, also the soles of my heat keep going really hot????
sallyplest
in
CLL Support
7 years ago
Considering Rituximab
My rheumatologist suggests
Rituximab
may be a good option. But I don't have nephritis or any major organ involvement. Is it realistic to think I might be able to get to remission? What experience have others had with this drug? Thank you ๐ธ
My rheumatologist suggests
Rituximab
may be a good option. But I don't have nephritis or any major organ involvement. Is it realistic to think I might be able to get to remission? What experience have others had with this drug? Thank you ๐ธ
ShannonB
in
LUPUS UK
7 years ago
06/28/2017 stop ibrutinib and started venetoclax
My husband, Bill, 55, was diagnosed CLL on Nov 2014, FCR chemotherapy 2016, failed, then Ibrutinib until 2017/06, took Venetoclax 2017/07
My husband, Bill, 55, was diagnosed CLL on Nov 2014, FCR chemotherapy 2016, failed, then Ibrutinib until 2017/06, took Venetoclax 2017/07
wwd-bill
in
CLL Support
7 years ago
Tocilizumab 1 year on
Had been on
Rituximab
briefly and before that enbrel for a couple of mths. Diagnosed in March 2014 with inflammatory RA or RD to give it it more apt name. For first 3-4mths on Tocilizumab my life was transformed and I was near normal.
Had been on
Rituximab
briefly and before that enbrel for a couple of mths. Diagnosed in March 2014 with inflammatory RA or RD to give it it more apt name. For first 3-4mths on Tocilizumab my life was transformed and I was near normal.
Chezis21
in
NRAS
7 years ago
Anyone else w/ CLL getting rashes? I need your feedback
I'm wondering how many people with CLL is getting rashes on their shins of their legs, whether their treatment was with FCR or inbru? I've been in remission for almost 10 years now and have been battling this rash for almost all of it. I would love to get anyone's feed back since my 6 month checkup is
I'm wondering how many people with CLL is getting rashes on their shins of their legs, whether their treatment was with FCR or inbru? I've been in remission for almost 10 years now and have been battling this rash for almost all of it. I would love to get anyone's feed back since my 6 month checkup is
Loulou46
in
CLL Support
7 years ago
Travel insurance
Don't know if allowed to name firms but having spent 6 hours on web and phone I located an incredibly thorough insurer who was willing to offer insurance for Europe wide travel even though I am currently on iv FCR. They asked about all medications and seemed to understand CLL. It's called World First
Don't know if allowed to name firms but having spent 6 hours on web and phone I located an incredibly thorough insurer who was willing to offer insurance for Europe wide travel even though I am currently on iv FCR. They asked about all medications and seemed to understand CLL. It's called World First
abikaasa
in
CLL Support
7 years ago
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