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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
Metojet dosage
I did have two sets of
Rituximab
infusions, but the improvement was minimal and I was completely wiped out for three months. I am now waiting for the funding to be approved for Tocilizumab. I have my concerns about that, but that's not what I'm leading up to here.
I did have two sets of
Rituximab
infusions, but the improvement was minimal and I was completely wiped out for three months. I am now waiting for the funding to be approved for Tocilizumab. I have my concerns about that, but that's not what I'm leading up to here.
Jora
in
NRAS
7 years ago
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Eltrombopag (responses in children ITP)
Prior to this she tried
rituximab
and prednisone with no success. Platelets had always been single figures since diagnosis in march 2015 (count was 12-16 with prednisone). Her platelet count has slowly increase over the months with her highest count being 44.
Prior to this she tried
rituximab
and prednisone with no success. Platelets had always been single figures since diagnosis in march 2015 (count was 12-16 with prednisone). Her platelet count has slowly increase over the months with her highest count being 44.
TayahC
in
ITP Support Association
7 years ago
Starting FCR
as his WBC is high, so he's got to take the chemo tablets to lower them for next month so he's starting fludarabine and cyclophosphamide tomorrow morning via tablet at home, I was just wondering if this is normal that his
Rituximab
is delayed until next month?
as his WBC is high, so he's got to take the chemo tablets to lower them for next month so he's starting fludarabine and cyclophosphamide tomorrow morning via tablet at home, I was just wondering if this is normal that his
Rituximab
is delayed until next month?
Chelseaxx
in
CLL Support
7 years ago
The Final Countdown
Hi All...tonight I accidentally stumbled onto this group. After reading several posts I didn't discover a post that mirrors my reality. On Labor Day September 2014, I noticed swelling on my chest. The touch was tender. I then made a visit to my primary care doctor. He examined my lumps and asked me
Hi All...tonight I accidentally stumbled onto this group. After reading several posts I didn't discover a post that mirrors my reality. On Labor Day September 2014, I noticed swelling on my chest. The touch was tender. I then made a visit to my primary care doctor. He examined my lumps and asked me
pilantd
in
CLL Support
7 years ago
Recovery time
My OH had his last (of 4) FCR treatments in August. He had not tolerated them well, so each session was less than the last. Haematologist says treatment has been 99% successful, and now just try to get on and live life as normal. He is definitely gaining in energy - back cycling regularly, needing
My OH had his last (of 4) FCR treatments in August. He had not tolerated them well, so each session was less than the last. Haematologist says treatment has been 99% successful, and now just try to get on and live life as normal. He is definitely gaining in energy - back cycling regularly, needing
shoppingtrolley
in
CLL Support
7 years ago
FCR treatment
I've now received treatment, starting Dec 2016 for six rounds of FCR as part in a UK trial. I have been told I am in complete remission, which is great news, and a weight off my mind. I must have been more worried than I was able to admit, as I now feel able to get on with living again. Follow up in
I've now received treatment, starting Dec 2016 for six rounds of FCR as part in a UK trial. I have been told I am in complete remission, which is great news, and a weight off my mind. I must have been more worried than I was able to admit, as I now feel able to get on with living again. Follow up in
Barbarann
in
CLL Support
7 years ago
Itp verses sle
I have primary sle and secondary Itp, recently my sle had been in remission but my Itp had been uncontrollable I have tried every treatment medication,
rituximab
nothing works and my body now rejects prednisalone, so I have to have ivig, I had my last one last week and my platelets are up to 93 which
I have primary sle and secondary Itp, recently my sle had been in remission but my Itp had been uncontrollable I have tried every treatment medication,
rituximab
nothing works and my body now rejects prednisalone, so I have to have ivig, I had my last one last week and my platelets are up to 93 which
Manclady61
in
LUPUS UK
7 years ago
Ibrutinib & neuropathy?
My husband has been on ibrutinib for 7 months & it has been working well for him with minor side effects (small rash, some joint pain) until the last month. His white blood count is coming down very slowly - still at about 60. (He is waiting to get a stem cell transplant in January & has had FCR but
My husband has been on ibrutinib for 7 months & it has been working well for him with minor side effects (small rash, some joint pain) until the last month. His white blood count is coming down very slowly - still at about 60. (He is waiting to get a stem cell transplant in January & has had FCR but
Glees
in
CLL Support
7 years ago
"there has been a further reduction in the presence of the disease and limited evidence of any residual disease"
So said my consultant this week! 6 cycles of FCR totally worth it to get this news. No more blood thinning injections, and he also said that I would not need chemo again but would have Ibrutinib if I needed more treatment in the future. WBC still low so got to be careful, but definitely a good week.
So said my consultant this week! 6 cycles of FCR totally worth it to get this news. No more blood thinning injections, and he also said that I would not need chemo again but would have Ibrutinib if I needed more treatment in the future. WBC still low so got to be careful, but definitely a good week.
MattGGibson
in
CLL Support
7 years ago
DON'T FORGET TO GET YOUR FLU VACCINES & pneumococcal pneumonia or streptococcus pneumonia, Haemophilus influenza and staphylococcus aureus.
The new biologic medications (
rituximab
, orencia and Benlysta) can increase the risk of infection. Corticosteroids, including prednisone, increase the risk of infection. The higher the dose of corticosteroids you’re on, the longer you’re on the dose, the greater the risk of infection.
The new biologic medications (
rituximab
, orencia and Benlysta) can increase the risk of infection. Corticosteroids, including prednisone, increase the risk of infection. The higher the dose of corticosteroids you’re on, the longer you’re on the dose, the greater the risk of infection.
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
7 years ago
Batty night🦇
Well , we spent last night organising my youngest son as he is off to uni in holland today , he on an early flight so we all went to bed early as im on second
rituximab
infusion today. The house alarm went off at 3.34 so i went down with my other son , looked around saw nothing.
Well , we spent last night organising my youngest son as he is off to uni in holland today , he on an early flight so we all went to bed early as im on second
rituximab
infusion today. The house alarm went off at 3.34 so i went down with my other son , looked around saw nothing.
weathervane
in
LUPUS UK
7 years ago
FCR Domperidone
Hi everyone. I am having my first lot of FCR and this is the first day at home with all my tablets! So many! Can I ask those of you that were given domperidone for sickness if you took them when you didn’t feel sick or just when you did? It says I can have 3 per day. I don’t feel sick yet. Thank you.
Hi everyone. I am having my first lot of FCR and this is the first day at home with all my tablets! So many! Can I ask those of you that were given domperidone for sickness if you took them when you didn’t feel sick or just when you did? It says I can have 3 per day. I don’t feel sick yet. Thank you.
Cindy1462
in
CLL Support
7 years ago
How Can I Help My Partner With Lupus? + Rituximab
Week ago, we were told that pills are not heplful for him and that it is necessary to try
Rituximab
. So another roller coaster. I found so many helpful information here, but I still have two questions: 1. What side effects can we expect, especially right after infusion?
Week ago, we were told that pills are not heplful for him and that it is necessary to try
Rituximab
. So another roller coaster. I found so many helpful information here, but I still have two questions: 1. What side effects can we expect, especially right after infusion?
DankaCi
in
LUPUS UK
7 years ago
ANCA-positive and MPO - OR???
He was without medicine for six weeks and then he got a
rituximab
1000mg. When he stopped cyclofosfamid his EGFR was 55. EGFR is still getting better - now it is 75 and his P-creatinin is 98. He still has protein in the urin. We are now unsure about next
rituximab
- YES or NO?
He was without medicine for six weeks and then he got a
rituximab
1000mg. When he stopped cyclofosfamid his EGFR was 55. EGFR is still getting better - now it is 75 and his P-creatinin is 98. He still has protein in the urin. We are now unsure about next
rituximab
- YES or NO?
Lima51
in
Vasculitis UK
7 years ago
Nearing treatment?
Hello! I just had my 3 monthly visit with my haemotologist. My lymphocytes have jumped from 10 to 27. My glands are feeling bigger ...especially under my armpits. Hemoglobin and platelets all still in normal range and I actually feel good. My haemotologist says he will confer with his colleagues and
Hello! I just had my 3 monthly visit with my haemotologist. My lymphocytes have jumped from 10 to 27. My glands are feeling bigger ...especially under my armpits. Hemoglobin and platelets all still in normal range and I actually feel good. My haemotologist says he will confer with his colleagues and
DebLeeCox
in
CLL Support
7 years ago
Rituximab and steroid injection 🤔
She has referred me for a spinal steroid injection for the pain but i was wondering how quickly can you have this after the
rituximab
, do you you have to wait weeks or months or does it matter ?
She has referred me for a spinal steroid injection for the pain but i was wondering how quickly can you have this after the
rituximab
, do you you have to wait weeks or months or does it matter ?
weathervane
in
LUPUS UK
7 years ago
Clinical Neurophysiology
Was diagnosed with pmr+ 6yrs ago,saw my consultant 10days ago,said he would arrange for a repeat
rituximab
infusion,but got this notice instead,for the neuro exam. Would appreciate any "inside" info from my friends on site. Once again I thank you for being there. John
Was diagnosed with pmr+ 6yrs ago,saw my consultant 10days ago,said he would arrange for a repeat
rituximab
infusion,but got this notice instead,for the neuro exam. Would appreciate any "inside" info from my friends on site. Once again I thank you for being there. John
paisleyman74
in
PMRGCAuk
7 years ago
How many Lupus patients here have been offered biologics?
I contacted the hospital today and am asking for statistical info under the Freedom of Information Act of how many patients in my PCT have been offered
rituximab
or benlysta (my PCT does not allow Benlysta use!) since biologics have been licensed.
I contacted the hospital today and am asking for statistical info under the Freedom of Information Act of how many patients in my PCT have been offered
rituximab
or benlysta (my PCT does not allow Benlysta use!) since biologics have been licensed.
Dragonfly4
in
LUPUS UK
7 years ago
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