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Belimumab?
HI all, i have been on
rituximab
for the past 2 years for lupus nephritis, but im still leaking protein. I have seen my rheumatologist today and she is going to see if i can have Belimumab. Ive read about it and there is some really scary side effects!
HI all, i have been on
rituximab
for the past 2 years for lupus nephritis, but im still leaking protein. I have seen my rheumatologist today and she is going to see if i can have Belimumab. Ive read about it and there is some really scary side effects!
Rach459
in
LUPUS UK
7 years ago
Have Relapsed From FCR and looking for best choice for Round Two
Was diagnosed cll 6 yrs ago. At age 49 first time Id ever been to doctor in my life. Living in Canada. Never went back to Doctor for 4 yrs didn't want to take any non natural treatments. Finally heart pounding in ears so loud couldn't watch Tv without sound cranked up. Spleen so large I looked 8 months
Was diagnosed cll 6 yrs ago. At age 49 first time Id ever been to doctor in my life. Living in Canada. Never went back to Doctor for 4 yrs didn't want to take any non natural treatments. Finally heart pounding in ears so loud couldn't watch Tv without sound cranked up. Spleen so large I looked 8 months
CLLCOLIN
in
CLL Support
6 years ago
Avacopan trial update.
I have had the last of my weekly
Rituximab
infusions.... As I have lost 8kg in 6 weeks I decided I would celebrate with KFC!!
I have had the last of my weekly
Rituximab
infusions.... As I have lost 8kg in 6 weeks I decided I would celebrate with KFC!!
HFox
in
Vasculitis UK
7 years ago
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Enlarged spleen
Quick update since my last post about spleen pain. I went for an ultrasound and my spleen size and weight has basically doubled. They've taken more bloods for profiling and prognosis, also getting a CT scan done on the 22nd. It's looking more likely I'll be getting treatment pretty soon, probably FCR
Quick update since my last post about spleen pain. I went for an ultrasound and my spleen size and weight has basically doubled. They've taken more bloods for profiling and prognosis, also getting a CT scan done on the 22nd. It's looking more likely I'll be getting treatment pretty soon, probably FCR
Daveyo
in
CLL Support
7 years ago
Rituximab vs abatacept-- After Enbrel fails
She suggested changing to
rituximab
or abatacept. Anyone here have experience with this change? Did you have good results?
She suggested changing to
rituximab
or abatacept. Anyone here have experience with this change? Did you have good results?
shareasmile
in
NRAS
7 years ago
Avacopan Trial
I have had
rituximab
which I have to have every Thursday for 4 weeks, and then I am either taking Avacopan or Prednisolone. I don't know which!!
I have had
rituximab
which I have to have every Thursday for 4 weeks, and then I am either taking Avacopan or Prednisolone. I don't know which!!
HFox
in
Vasculitis UK
7 years ago
Rituximab vs abatacept-- any thoughts?
She suggested changing to
rituximab
or abatacept. Anyone here have experience with this change? Did you have good results?
She suggested changing to
rituximab
or abatacept. Anyone here have experience with this change? Did you have good results?
shareasmile
in
LUPUS UK
7 years ago
Post FCR treatment 3 months blood test just taken results lower then expected
Hi everyone! I am new to this site. I completed a 6 month cycle of FCR and I am now 3 months post treatment. I have been feeling good but have to make sure I do not over do it. Yesterday I went for my 3 month check up and had blood work. It did not go as well as expected. My white count is 1.3
Hi everyone! I am new to this site. I completed a 6 month cycle of FCR and I am now 3 months post treatment. I have been feeling good but have to make sure I do not over do it. Yesterday I went for my 3 month check up and had blood work. It did not go as well as expected. My white count is 1.3
Lindyver
in
CLL Support
7 years ago
Post-treatment results
My OH had 4 FCR treatments, each one reduced from the previous one because of his reactions (low platelets, fatigue). Last treatment was early August. Subsequent monthly blood tests show haemoglobin and platelet levels continuing to drop (10.3 down this month from 11.6; platelets 49 down from 52).
My OH had 4 FCR treatments, each one reduced from the previous one because of his reactions (low platelets, fatigue). Last treatment was early August. Subsequent monthly blood tests show haemoglobin and platelet levels continuing to drop (10.3 down this month from 11.6; platelets 49 down from 52).
shoppingtrolley
in
CLL Support
7 years ago
Rituximab
I am on long term steroids at the moment because nothing else seems to work but I have just got a new Consultant and she wants to put me on
Rituximab
infusions. Does anyone know if these work and what are the side effects.
I am on long term steroids at the moment because nothing else seems to work but I have just got a new Consultant and she wants to put me on
Rituximab
infusions. Does anyone know if these work and what are the side effects.
Bakbre
in
LUPUS UK
7 years ago
My Itchy skin
Hi I have CLL since Feb. 2015 and had 6 cycles of FCR . I was in remission for about a year . Ever since my second treatment of chemo I had all kind of skin issues like really itchy skin easy bruising rash that looks like shingles and ant bites that leaves a scar. Anybody have this symptom I want to
Hi I have CLL since Feb. 2015 and had 6 cycles of FCR . I was in remission for about a year . Ever since my second treatment of chemo I had all kind of skin issues like really itchy skin easy bruising rash that looks like shingles and ant bites that leaves a scar. Anybody have this symptom I want to
uncle2015
in
CLL Support
7 years ago
Steroids Damage
I thought the
Rituximab
infusion had caused me serious damage however it is looking more likely the damage has been caused by steroids. I have severe lung tissue damage, vocal cord and voice box damage. My weight is getting uncontrollable. My confidence and self esteem is so low.
I thought the
Rituximab
infusion had caused me serious damage however it is looking more likely the damage has been caused by steroids. I have severe lung tissue damage, vocal cord and voice box damage. My weight is getting uncontrollable. My confidence and self esteem is so low.
LSurtees
in
LUPUS UK
7 years ago
Facet joint injections and tramadol 🤞🏻🤞🏻
I don't think the
rituximab
has kicked in yet which has not helped and lymph nodes are enlarged again . In the meantime i have been to see the consultant about my bulging discs and he has recommended 4 facet joint injections under x-ray guidance which i am going to have on Friday.
I don't think the
rituximab
has kicked in yet which has not helped and lymph nodes are enlarged again . In the meantime i have been to see the consultant about my bulging discs and he has recommended 4 facet joint injections under x-ray guidance which i am going to have on Friday.
weathervane
in
LUPUS UK
7 years ago
Chest pain update
I recently had my
rituximab
infusions and I have an appt at st thomas' in November but I can't deal with this pain much longer !
I recently had my
rituximab
infusions and I have an appt at st thomas' in November but I can't deal with this pain much longer !
Charlottelauren
in
LUPUS UK
7 years ago
FCR after failing B/R?
I am 5 months post treatment with B/R and my ALC is moving up. My oncologist mentioned the possibility of FCR at some point. I am 72 years old and in good health. My question is shouldn't FCR be first line? Would you take FCR or Imbruvica? What are your thoughts? Thank you for your reply. Sue Atlanta
I am 5 months post treatment with B/R and my ALC is moving up. My oncologist mentioned the possibility of FCR at some point. I am 72 years old and in good health. My question is shouldn't FCR be first line? Would you take FCR or Imbruvica? What are your thoughts? Thank you for your reply. Sue Atlanta
SueVG
in
CLL Support
7 years ago
Elevated Lymphocyte Count 4 Months After Bendamustine/Rituxin
Hello Members: In mid-June I finished 6 months of Bendamustine/Rituxin. I saw my onc today and my lymph nodes are elevated (5.7) saw her last month and they were also elevated(5.0) She is suggesting that I may want to have FCR or Imbruvica when I need treatment again. Right now I am on hold until January
Hello Members: In mid-June I finished 6 months of Bendamustine/Rituxin. I saw my onc today and my lymph nodes are elevated (5.7) saw her last month and they were also elevated(5.0) She is suggesting that I may want to have FCR or Imbruvica when I need treatment again. Right now I am on hold until January
SueVG
in
CLL Support
7 years ago
uti, cough, fever and other virus related symptoms
I was diagnosed Stage 4 SLL in December 2014 and started FCR the following March in 2015. The gap was due to my oncologist suddenly dying. This combo put me in remission for a year and a half. Came back full force (CT scan) in early 2017 and started Imbruvica then nodes went away again. My question:
I was diagnosed Stage 4 SLL in December 2014 and started FCR the following March in 2015. The gap was due to my oncologist suddenly dying. This combo put me in remission for a year and a half. Came back full force (CT scan) in early 2017 and started Imbruvica then nodes went away again. My question:
springie
in
CLL Support
7 years ago
Advice on Rituximab Infusions?
Hello Been a while since I posted but would be really grateful for some advice from anyone who has experienced
rituximab
infusions.
Hello Been a while since I posted but would be really grateful for some advice from anyone who has experienced
rituximab
infusions.
Galaxy2
in
Vasculitis UK
7 years ago
Port installed-Chemo Round1 starts Monday
Opted for the Portacath to receive my chemo (in Canada done via infusion) of FCR. The Port installation was done yesterday morning, so the afternoon was a little uncomfortable but today I am quite fine. I chose the Port after advice from my daughter, sisters and nieces (all nurses) when asking whether
Opted for the Portacath to receive my chemo (in Canada done via infusion) of FCR. The Port installation was done yesterday morning, so the afternoon was a little uncomfortable but today I am quite fine. I chose the Port after advice from my daughter, sisters and nieces (all nurses) when asking whether
Marie-54
in
CLL Support
7 years ago
Stay positive x
Predisolone no good, ivig no good , platelets at 9 .so starting
rituximab
, hopefully it will do the job. I want to get better for myself but more so for my husband and daughter who have been superb support. Anyway kind thoughts to you all and wish you a speedy recovery. X
Predisolone no good, ivig no good , platelets at 9 .so starting
rituximab
, hopefully it will do the job. I want to get better for myself but more so for my husband and daughter who have been superb support. Anyway kind thoughts to you all and wish you a speedy recovery. X
Olivia2812
in
ITP Support Association
7 years ago
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