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LUPUS AND THE AGONY OF HAVING TO GIVE UP MY JOB
I say that, because, since January 2016, even though l have been with, the most effective Lupus Team, on
Rituximab
infusions, high dose steroids plus other medications and it is still upsetting my life! A truly unwanted friend! How dare lupus!
I say that, because, since January 2016, even though l have been with, the most effective Lupus Team, on
Rituximab
infusions, high dose steroids plus other medications and it is still upsetting my life! A truly unwanted friend! How dare lupus!
eunidarling
in
LUPUS UK
8 years ago
Rituximab infusions
Hi, I had my first
rituximab
infusion yesterday and my second will be in two weeks time. I was just wondering whether I should still have my yearly flu injection whilst on this treatment. I also take azathioprine so my immune system is really getting knocked back. Thanks in advance
Hi, I had my first
rituximab
infusion yesterday and my second will be in two weeks time. I was just wondering whether I should still have my yearly flu injection whilst on this treatment. I also take azathioprine so my immune system is really getting knocked back. Thanks in advance
Gillibun
in
NRAS
8 years ago
Medical ID bracelets
Hello My wife was diagnosed with EGPA in February 2015 and is currently taking pred along with half yearly
Rituximab
infusions. We have been thinking about getting her a bracelet to record details of her condition/meds in case of an accident/emergency.
Hello My wife was diagnosed with EGPA in February 2015 and is currently taking pred along with half yearly
Rituximab
infusions. We have been thinking about getting her a bracelet to record details of her condition/meds in case of an accident/emergency.
Riff1954
in
Vasculitis UK
8 years ago
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Rituximab - Its working :)
Just wanted to share my experience for anyone that is about to start on
Rituximab
...I had my first infusions in April, 2 weeks apart and felt so ill for 2 weeks after each one. Seemed to have pain in every joint in my body. I struggled through May and June with no signs of improvement at all.
Just wanted to share my experience for anyone that is about to start on
Rituximab
...I had my first infusions in April, 2 weeks apart and felt so ill for 2 weeks after each one. Seemed to have pain in every joint in my body. I struggled through May and June with no signs of improvement at all.
Livvy5
in
NRAS
8 years ago
What to expect.
I am due to start Bendamustine &
Rituximab
Treatment in the next two to three weeks. Wondered if anyone could let know what I'm in for. Thanx.
I am due to start Bendamustine &
Rituximab
Treatment in the next two to three weeks. Wondered if anyone could let know what I'm in for. Thanx.
Jacksc06
in
CLL Support
8 years ago
Question about needing bone marrow biopsy after treatment
I've just completed 5 chemo rounds of FCR. My hematologist, when I asked him about needing a biopsy to check the effectiveness of treatment, said basically that a) my counts all looked right where they'd hoped they would be, and b) how would having more specific information from a biopsy help? His point
I've just completed 5 chemo rounds of FCR. My hematologist, when I asked him about needing a biopsy to check the effectiveness of treatment, said basically that a) my counts all looked right where they'd hoped they would be, and b) how would having more specific information from a biopsy help? His point
brian_in_Seattle
in
CLL Support
8 years ago
Trying to make a difference
The Vasculitis has appeared to be rearing again and under the Lister Hospital Team where my disease is understood as well as can be, I am receiving
Rituximab
with hope that this will attack the disease and keep it at bay.
The Vasculitis has appeared to be rearing again and under the Lister Hospital Team where my disease is understood as well as can be, I am receiving
Rituximab
with hope that this will attack the disease and keep it at bay.
Neildougherty
in
Vasculitis UK
8 years ago
Anti inflammatories
I'm on
rituximab
and it has helped but not enough. I'd like something like methotrexate to give it a boost, but I'm back on the rheumy-gastroenterologist roller coaster because of worries about liver damage.
I'm on
rituximab
and it has helped but not enough. I'd like something like methotrexate to give it a boost, but I'm back on the rheumy-gastroenterologist roller coaster because of worries about liver damage.
cathie
in
NRAS
8 years ago
Methotrexate with rituximab
Is it essential to have to take methotrexate with
rituximab
infusion.
Is it essential to have to take methotrexate with
rituximab
infusion.
Keen62
in
NRAS
8 years ago
Starting Treatment.
After nearly a year since my diagnosis, treatment starts tomorrow, (Bendamustine &
Rituximab
). Feeling a little lonely, anxious and emotional. I keep telling myself that despite side effects etc. That this is actually to make me feel better.
After nearly a year since my diagnosis, treatment starts tomorrow, (Bendamustine &
Rituximab
). Feeling a little lonely, anxious and emotional. I keep telling myself that despite side effects etc. That this is actually to make me feel better.
Jacksc06
in
CLL Support
8 years ago
Follow up on Rituximab- induced Hypogammaglobulaemia
Have posted recently about my latest diagnosis of
Rituximab
-induced Hypogammagobulaemia. Now require immunoglobulin infusions x 3 three weeks apart to treat immunosuppression caused by
Rituximab
, metho and steroids.
Have posted recently about my latest diagnosis of
Rituximab
-induced Hypogammagobulaemia. Now require immunoglobulin infusions x 3 three weeks apart to treat immunosuppression caused by
Rituximab
, metho and steroids.
Scorer
in
NRAS
8 years ago
FCR round 1
Just an update on my first treatment. I was extremely ill with nausea during round 1 but 14 days on I'm feeling better than I have in years. Nodes are down and I feel lighter and brighter. I don't want to frighten anyone waiting to start FCR so just want to let you know how well I'm doing now. I have
Just an update on my first treatment. I was extremely ill with nausea during round 1 but 14 days on I'm feeling better than I have in years. Nodes are down and I feel lighter and brighter. I don't want to frighten anyone waiting to start FCR so just want to let you know how well I'm doing now. I have
Kenn123
in
CLL Support
8 years ago
Diet and excercise
, and was straight back on steroids, but this time I got steroid induced type diabetes, so was rushed of them and put on
rituximab
. Thankfully diabetes has gone, but I am now susceptible apparently. On Friday after nearly 3 years my platelets decided they would vanish again, down to 10.
, and was straight back on steroids, but this time I got steroid induced type diabetes, so was rushed of them and put on
rituximab
. Thankfully diabetes has gone, but I am now susceptible apparently. On Friday after nearly 3 years my platelets decided they would vanish again, down to 10.
Ironspur14
in
ITP Support Association
8 years ago
Aggressive Follicular Lymphoma Now In NIH CAR-T Clinical Trial
She relapsed within 4 months of R-CHOP (6 cycles) and within 2 months of bendamustine/
rituximab
/velcade (6 cycles). This is when her oncologist said she had an aggressive form of follicular lymphoma.
She relapsed within 4 months of R-CHOP (6 cycles) and within 2 months of bendamustine/
rituximab
/velcade (6 cycles). This is when her oncologist said she had an aggressive form of follicular lymphoma.
wmay13241
in
Non Hodgkin's Lymphoma Friends
8 years ago
Acceptance. I need tips!
I've just started
Rituximab
in April, my MD says it's working...told me we have to give it more time. I feel isolated, and...well! Too many emotions to NOT be confused about what I'm supposed to even do. Just turned 35! I'm an RN, haven't worked in going on 2 yrs.
I've just started
Rituximab
in April, my MD says it's working...told me we have to give it more time. I feel isolated, and...well! Too many emotions to NOT be confused about what I'm supposed to even do. Just turned 35! I'm an RN, haven't worked in going on 2 yrs.
Kj9681
in
My MSAA Community
8 years ago
Constant UTI's
I take various meds including MTX 25mg via injection, I also have
Rituximab
infusions every 6 months. For the past 4 years I've suffered from repeated UTI's. All urological investigations have been normal, apart from bladder scarring caused by the UTI"s.
I take various meds including MTX 25mg via injection, I also have
Rituximab
infusions every 6 months. For the past 4 years I've suffered from repeated UTI's. All urological investigations have been normal, apart from bladder scarring caused by the UTI"s.
Janeellen
in
NRAS
8 years ago
FCR 6th Cycle and side effects ?
I have just had my 5th FCR treatment and immediately before this my consultant suggested this would be my last instead of going for a sixth. When I next see him in 3 weeks time he said I will then have another BMB and CT scan to determine if the treatment has been successful. I am 63 years old and have
I have just had my 5th FCR treatment and immediately before this my consultant suggested this would be my last instead of going for a sixth. When I next see him in 3 weeks time he said I will then have another BMB and CT scan to determine if the treatment has been successful. I am 63 years old and have
Penkman
in
CLL Support
8 years ago
Rituximab
Hi all has anyone here experienced
Rituximab
infusions ? I have SLE , Dermatomyositis, Sjorgren's and a string of other ailments . I had my first infusion 4 July , second one 18 July I was told at the time that I tolerated it quite well as I understand some people don't .
Hi all has anyone here experienced
Rituximab
infusions ? I have SLE , Dermatomyositis, Sjorgren's and a string of other ailments . I had my first infusion 4 July , second one 18 July I was told at the time that I tolerated it quite well as I understand some people don't .
Skid
in
LUPUS UK
8 years ago
Newbie just saying hello
Recently however I had the FABULOUS pleasure to hear that my MS had progressed to SPMS and now am on
Rituximab
and praying this is something that finally helps me get at least a little relief from this bastardized disease. Live in Winthrop just outside East Boston.
Recently however I had the FABULOUS pleasure to hear that my MS had progressed to SPMS and now am on
Rituximab
and praying this is something that finally helps me get at least a little relief from this bastardized disease. Live in Winthrop just outside East Boston.
Flipsider007
in
My MSAA Community
8 years ago
Anti sickness medication
Hi, Can anyone help me. I've just started first round of FCR. It went well for first two days but now I'm literally as sick as a dog. Have phoned nhs 24 and my husband is now going to pick up a prescription. Don't even know what it is for. Did any medication prove effective for anyone else? Any recommendations
Hi, Can anyone help me. I've just started first round of FCR. It went well for first two days but now I'm literally as sick as a dog. Have phoned nhs 24 and my husband is now going to pick up a prescription. Don't even know what it is for. Did any medication prove effective for anyone else? Any recommendations
Kenn123
in
CLL Support
8 years ago
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