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Rituximab stopped in NI
Hi fellow luppies My Lupus nurse has just informed me that Rituximab is no longer being offered to patients because of the dangers it poses with COVID. Alternatives will have to be looked at. I personally find I’m doing quite well on leflunomide. Good luck with alternatives🤗
Hi fellow luppies My Lupus nurse has just informed me that Rituximab is no longer being offered to patients because of the dangers it poses with COVID. Alternatives will have to be looked at. I personally find I’m doing quite well on leflunomide. Good luck with alternatives🤗
Maverick77
in
LUPUS UK
2 years ago
To continue or not....that is the question
I started treatment in July 2021 after 18 months on W&W. Initially I was treated with Obinutuzumab but I had a severe reaction to the first 20mg and ended up in the A&E resuscitation ward. I was then swopped to Rituximab and Venetoclax, which was explained as normally being a second line treatment which
I started treatment in July 2021 after 18 months on W&W. Initially I was treated with Obinutuzumab but I had a severe reaction to the first 20mg and ended up in the A&E resuscitation ward. I was then swopped to Rituximab and Venetoclax, which was explained as normally being a second line treatment which
Dawson21
in
CLL Support
2 years ago
4th Vaccine
Just booked mine for Sunday. When i first tried to book on nhs site I didnt have my nhs no to hand. Went back on with that and have booked it. I havent the official letter but got the letter that mentions I am CEV and immunosuppressed and also my Rituximab card. Worse they can do is send me away.
Just booked mine for Sunday. When i first tried to book on nhs site I didnt have my nhs no to hand. Went back on with that and have booked it. I havent the official letter but got the letter that mentions I am CEV and immunosuppressed and also my Rituximab card. Worse they can do is send me away.
Evie3
in
NRAS
2 years ago
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Chickenpox and rituximab
Hi, I have RA and being treated with rituximab and leflunomide. I am a children's nanny and one of the children possible has chickenpox. I had it as a child but I'm not sure if I should avoid being near it or not. I don't think I've been told this for this treatment but was for my previous biologic.
Hi, I have RA and being treated with rituximab and leflunomide. I am a children's nanny and one of the children possible has chickenpox. I had it as a child but I'm not sure if I should avoid being near it or not. I don't think I've been told this for this treatment but was for my previous biologic.
Juliesb
in
NRAS
2 years ago
A very happy (and long-overdue) update
I thought that today, being World Encephalitis Day, I should finally write the post that I have been meaning to write for months. I can’t believe it’s been six months since my last update, and my oh my how different things are now! A brief recap: my husband was diagnosed with HSE In June 2021. He was
I thought that today, being World Encephalitis Day, I should finally write the post that I have been meaning to write for months. I can’t believe it’s been six months since my last update, and my oh my how different things are now! A brief recap: my husband was diagnosed with HSE In June 2021. He was
every_cloud
in
Encephalitis Society
2 years ago
Rituximab Dental care
Hello. I was wondering if it is ok to have some dental work done after my Rituximab infusion. Thanks 😊
Hello. I was wondering if it is ok to have some dental work done after my Rituximab infusion. Thanks 😊
ks1966
in
NRAS
2 years ago
Rituximab or Leflunomide
Having stopped rituximab in October after being informed there was no immunity for patients on it, I started leflunomide in the meantime until I got all my vaccines and I find I’m feeling really well on it. Has anyone else tried Leflunomide and what are your thoughts on it.
Having stopped rituximab in October after being informed there was no immunity for patients on it, I started leflunomide in the meantime until I got all my vaccines and I find I’m feeling really well on it. Has anyone else tried Leflunomide and what are your thoughts on it.
Maverick77
in
LUPUS UK
2 years ago
Lupus Nephritis and Cyclophosphamide
Hi all, This is my first post here although I've been on this forum for a while. I'm 23 and got diagnosed with SLE and lupus nephritis a year ago in March. I've never had the nephritis treated until recently however. I take 400mg hydroxychloroquine (I should take 300mg based on weight though) and have
Hi all, This is my first post here although I've been on this forum for a while. I'm 23 and got diagnosed with SLE and lupus nephritis a year ago in March. I've never had the nephritis treated until recently however. I take 400mg hydroxychloroquine (I should take 300mg based on weight though) and have
CPower
in
LUPUS UK
2 years ago
How common is relapse within twelve months of rituximab?
How soon after rituximab did relapse happen for you? I was diagnosed with GPA December 2020, by March 18th I had my 2 covid jabs rushed to only 3 weeks apart then had 2 6 hour rounds of rituximab. Now it looks like I've relapsed. Is this common? I'm 34 with 2 young children and I'm petrified I'm not
How soon after rituximab did relapse happen for you? I was diagnosed with GPA December 2020, by March 18th I had my 2 covid jabs rushed to only 3 weeks apart then had 2 6 hour rounds of rituximab. Now it looks like I've relapsed. Is this common? I'm 34 with 2 young children and I'm petrified I'm not
Vqueen
in
Vasculitis UK
2 years ago
Ibrutinib Resistance
Hello Everyone, I have been a long time reader of this forum and it has been extremely helpful. My mother (73 yrs old) was diagnosed with CLL about 8 years ago. She went through several treatments: Chlorambucil for 3 yrs, then Bendamustine/Rituximab (6 cycles) with remission for 1.5 yrs. Afterwards,
Hello Everyone, I have been a long time reader of this forum and it has been extremely helpful. My mother (73 yrs old) was diagnosed with CLL about 8 years ago. She went through several treatments: Chlorambucil for 3 yrs, then Bendamustine/Rituximab (6 cycles) with remission for 1.5 yrs. Afterwards,
Adel1
in
CLL Support
2 years ago
Booster shot on Rituximab ?
Booster shot on Rituximab. Hi guys have just finished 4 week Rituxumab infusions platelets have gone up to 230. Do you know how long after finishing Ritux I will be able to have a booster shot? Am desperate to fly Australia to NZ to visit my adult children it’s been 3 years.
Booster shot on Rituximab. Hi guys have just finished 4 week Rituxumab infusions platelets have gone up to 230. Do you know how long after finishing Ritux I will be able to have a booster shot? Am desperate to fly Australia to NZ to visit my adult children it’s been 3 years.
Loftyc
in
ITP Support Association
2 years ago
Angel54
Hi anyone experienced anything similar ,been on Abatacept about two year ,since having my Covid vaccine and antibiotics for chest infection about two month ago I have felt so unwell, I am currently on 20 mg steroids and all I’m experiencing is pain everywhere and burning pain all over body . Last
Hi anyone experienced anything similar ,been on Abatacept about two year ,since having my Covid vaccine and antibiotics for chest infection about two month ago I have felt so unwell, I am currently on 20 mg steroids and all I’m experiencing is pain everywhere and burning pain all over body . Last
Angels54
in
NRAS
2 years ago
Rituximab?
Hello my dear community members, I would like to start off by thanking each of you for taking the time to reply to my previous question. We are all in this fight together and having your support means more to me than you know. I was recommended by by physician to start with Ocrevus as my Ms has been
Hello my dear community members, I would like to start off by thanking each of you for taking the time to reply to my previous question. We are all in this fight together and having your support means more to me than you know. I was recommended by by physician to start with Ocrevus as my Ms has been
canimambo
in
My MSAA Community
2 years ago
Cashing in life insurance and pensions
I have been diagnosed with cll/sll for 4 years now. Chemotherapy was not successful and now on 2 years of venetoclax and Rituximab in the UK. Has anyone been in a position, due to incurable cancer, to cash in life insurance and pensions? Due to also having MS and bot responding to chemotherapy - hope
I have been diagnosed with cll/sll for 4 years now. Chemotherapy was not successful and now on 2 years of venetoclax and Rituximab in the UK. Has anyone been in a position, due to incurable cancer, to cash in life insurance and pensions? Due to also having MS and bot responding to chemotherapy - hope
bettyba
in
CLL Support
2 years ago
Venetoclax & fainting?
Hi everyone, I joined a few weeks ago and have found the reading enlightening , thank you. This is my first post , seeking some info about your experiences with V. I am just on 8 months thru the program, of ramp up Venetoclaxfor a month, then 6 mths of monthly Rituximab infusion and continuing V for
Hi everyone, I joined a few weeks ago and have found the reading enlightening , thank you. This is my first post , seeking some info about your experiences with V. I am just on 8 months thru the program, of ramp up Venetoclaxfor a month, then 6 mths of monthly Rituximab infusion and continuing V for
Moggn
in
CLL Support
2 years ago
New Mermber w MCL strating rescue treatment w Calquence
Hi, Im new here I have MCL, started my treatment w Benedustine + Rituximab for 6 Qts, then only Rituximab every two months for 24 months, ended on Feb 2021 w excellent results, then on Nov/Dec 2021. Symtoms reappearded on Nov/Dec 2021. On Jan 2022 started new treatment w Calquence, doing ok till now
Hi, Im new here I have MCL, started my treatment w Benedustine + Rituximab for 6 Qts, then only Rituximab every two months for 24 months, ended on Feb 2021 w excellent results, then on Nov/Dec 2021. Symtoms reappearded on Nov/Dec 2021. On Jan 2022 started new treatment w Calquence, doing ok till now
xxje
in
Non Hodgkin's Lymphoma Friends
2 years ago
Neutropenia post Rituximab and Covid Jabs
After routine blood test last week I have Zero Neutrophils count! I was sent to hospital for further tests and then given a week of antibiotics. Could this be due to Covid jabs ? My Rituximab Infusion was in June. I have been told to stop Methotrexate and isolate. Anyone had a similar experience? Thanks
After routine blood test last week I have Zero Neutrophils count! I was sent to hospital for further tests and then given a week of antibiotics. Could this be due to Covid jabs ? My Rituximab Infusion was in June. I have been told to stop Methotrexate and isolate. Anyone had a similar experience? Thanks
annekelt
in
NRAS
2 years ago
BTK+Venetoclax trial in the UK?
Hello, I was wondering if anyone is aware of any upcoming BTK+Venetoclax trials in the UK. The only one listed is the AVO vs AV vs FCR which is basically not recruiting anymore (probably because of the FCR arm). There are loads of these trials around the world but none in the UK. I wonder why. It seems
Hello, I was wondering if anyone is aware of any upcoming BTK+Venetoclax trials in the UK. The only one listed is the AVO vs AV vs FCR which is basically not recruiting anymore (probably because of the FCR arm). There are loads of these trials around the world but none in the UK. I wonder why. It seems
hope-73
in
CLL Support
2 years ago
Immunosuppressed and Omicron
Hi, just wondering what the consensus is now on Omicron's effect on Immunosuppressed people, ie, is it just like a bad cold for us also?? I am still taking precautions, but starting to feel like the odd one out a lot as most people now are not worrying so much if they get Omicron because of the not
Hi, just wondering what the consensus is now on Omicron's effect on Immunosuppressed people, ie, is it just like a bad cold for us also?? I am still taking precautions, but starting to feel like the odd one out a lot as most people now are not worrying so much if they get Omicron because of the not
trenarren
in
NRAS
2 years ago
3rd Rituximab Infusion One to Go!
I believe that the Rituximab infusions seem to be working. WBC back in normal range. RBC up but still a little low. My Haptoglobin has stayed the same at 14 which it has been for every test on record since September. I am wondering if anyone knows why that is and if I should be concerned. Thanks CBCWD
I believe that the Rituximab infusions seem to be working. WBC back in normal range. RBC up but still a little low. My Haptoglobin has stayed the same at 14 which it has been for every test on record since September. I am wondering if anyone knows why that is and if I should be concerned. Thanks CBCWD
SantaZia
in
CLL Support
2 years ago
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