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Antineutrophilic cytoplasmic antibody (ANCA) Vasculitis
Hello everyone. I hope everyone's been hanging in there. I haven't been feeling very good lately. I have all the regular PA symptoms and the B12 has helped considerably. But there's still something that's just not right. And I've been nagging at my doctor's to please help me and finally I got an appointment
Hello everyone. I hope everyone's been hanging in there. I haven't been feeling very good lately. I have all the regular PA symptoms and the B12 has helped considerably. But there's still something that's just not right. And I've been nagging at my doctor's to please help me and finally I got an appointment
EllaNore
in
Pernicious Anaemia Society
1 year ago
Rituximab...
So, 6 months ago I was offered 2 infusions Abatacept or Rituximab, I went for Abatacept as the first thing they told me was the worst side effect that can happen with Rituximab. Fast forward 6 months later and I now have RA Interstitial Lung Disease and the treatment for this is Rituximab, my lung specialist
So, 6 months ago I was offered 2 infusions Abatacept or Rituximab, I went for Abatacept as the first thing they told me was the worst side effect that can happen with Rituximab. Fast forward 6 months later and I now have RA Interstitial Lung Disease and the treatment for this is Rituximab, my lung specialist
RAat13
in
NRAS
1 year ago
POST 3 - CAR-T cell therapy
Since my last post things have been ticking over with regular blood tests, Clinic appointments and my bridging treatment which consists of weekly infusions of Rituximab and continuing with Venetoclax, 300mg daily. Apart from a reaction to the first infusion of Rituximab all has gone smoothly. In addition
Since my last post things have been ticking over with regular blood tests, Clinic appointments and my bridging treatment which consists of weekly infusions of Rituximab and continuing with Venetoclax, 300mg daily. Apart from a reaction to the first infusion of Rituximab all has gone smoothly. In addition
casanova
in
CLL Support
1 year ago
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splashsplash
UK based, CLL for 15 years, Treatments: FC, FCR, Ibrutinib, Venetoclax for 2.5 years, 6 month break now back on Venetoclax
UK based, CLL for 15 years, Treatments: FC, FCR, Ibrutinib, Venetoclax for 2.5 years, 6 month break now back on Venetoclax
splashsplash
in
CLL Support
6 months ago
Update treatment
it’s been about, half a year sinc[i]e i thought i had some options for the treatment i needed[/i] [i]I posted this dilemma here, and got a lot of responce to it. My thanks for this.[/i] [i]But unfortunately, there were no options for me, and the FCR was scheduled.[/i] [i]The first time, about two
it’s been about, half a year sinc[i]e i thought i had some options for the treatment i needed[/i] [i]I posted this dilemma here, and got a lot of responce to it. My thanks for this.[/i] [i]But unfortunately, there were no options for me, and the FCR was scheduled.[/i] [i]The first time, about two
Renefaassen
in
CLL Support
11 months ago
Rituximab
Hi there, I am have just received my second dose of Rituximab after having a
Spinal stroke (T2-4)
. My specialist said the stroke was caused by a flare in my vasculitis, therefore the reason to treat with Rituximab. My question is to patients that have been treated with this medication please
Hi there, I am have just received my second dose of Rituximab after having a
Spinal stroke (T2-4)
. My specialist said the stroke was caused by a flare in my vasculitis, therefore the reason to treat with Rituximab. My question is to patients that have been treated with this medication please
Zuzu798
in
Behçet's UK
1 year ago
Newly diagnosed GPA without renal involvement. Sorry it’s long.
In March I went to a new rheumatologist at a world famous teaching hospital. He is co-director of the vasculitis program and quite expert. It took persistence to get an appointment. My previous rheumatologist diagnosed me with Polymyalgia Rheumatica in 2016. She ordered an ANCA blood test in 2017 because
In March I went to a new rheumatologist at a world famous teaching hospital. He is co-director of the vasculitis program and quite expert. It took persistence to get an appointment. My previous rheumatologist diagnosed me with Polymyalgia Rheumatica in 2016. She ordered an ANCA blood test in 2017 because
SusanEleven
in
Vasculitis UK
1 year ago
Denied Covid-19 Vaccination
01/05/2023 - Received NHS email to book Spring Covid-19 Vaccination 25/05/2023 - Attended 4pm appointment at our own GP surgery with Husband who has Rituximab IV infusions + DMARDS for his RA (he is immunocompromised). I have SLE (Lupus). ~ On entering treatment room we were met with, “Neither of
01/05/2023 - Received NHS email to book Spring Covid-19 Vaccination 25/05/2023 - Attended 4pm appointment at our own GP surgery with Husband who has Rituximab IV infusions + DMARDS for his RA (he is immunocompromised). I have SLE (Lupus). ~ On entering treatment room we were met with, “Neither of
Turquoise-1
in
LUPUS UK
1 year ago
hu CAR-T 19 IL-18 4th Generation Clinical Trial 90 Day Check-up With All of My Favorite Tests
It's been a long time since I have received a MRD negative diagnosis, 13 years to be exact, after my FCR treatment. All of the other treatments didn't require a BMB to confirm a negative reading, I had a few remissions, but they were just on paper. My blood counts were good, and I felt fine, but a relapse
It's been a long time since I have received a MRD negative diagnosis, 13 years to be exact, after my FCR treatment. All of the other treatments didn't require a BMB to confirm a negative reading, I had a few remissions, but they were just on paper. My blood counts were good, and I felt fine, but a relapse
steve5441
in
CLL Support
7 months ago
Phase 1 trial testing CAR T-cell therapy GC012F in SLE
Gracell Biotechnologies announced the launch of a Phase 1 clinical trial in China testing GC012F, its experimental dual FastCAR T-cell therapy, for hard-to-treat systemic lupus erythematosus (SLE). The investigator-initiated trial (NCT05846347), underway at The First Affiliated Hospital of the Zhejiang
Gracell Biotechnologies announced the launch of a Phase 1 clinical trial in China testing GC012F, its experimental dual FastCAR T-cell therapy, for hard-to-treat systemic lupus erythematosus (SLE). The investigator-initiated trial (NCT05846347), underway at The First Affiliated Hospital of the Zhejiang
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
1 year ago
Palpitations after rituximab?
hi everyone, I am just wondering if anyone who has had rituximab experienced fast heart rate and palpitations after their infusions? And if so was it anything serious or how long did it take to go away? Thank you!!
hi everyone, I am just wondering if anyone who has had rituximab experienced fast heart rate and palpitations after their infusions? And if so was it anything serious or how long did it take to go away? Thank you!!
nada28
in
LUPUS UK
1 year ago
Swollen throat and rituximab?
Yesterday I had my first rituximab infusion, was OK last night but today started with sore throat, now it's swollen and I'm having difficulty swallowing. Only thing that helps is water. I'm really depressed and feel very tired and generally unwell. I was hoping this drug would properly help with what
Yesterday I had my first rituximab infusion, was OK last night but today started with sore throat, now it's swollen and I'm having difficulty swallowing. Only thing that helps is water. I'm really depressed and feel very tired and generally unwell. I was hoping this drug would properly help with what
RootsToots
in
NRAS
1 year ago
Chronic Lymphocytic Leukemia Therapy Guided by Measurable Residual Disease
From the New England Journal of Medicine 10th December 2023 [i]"The CLL treatment landscape has been transformed by targeted drugs. Continuous BTK inhibitor therapy has improved outcomes in patients with CLL. Fixed-duration venetoclax in combination with obinutuzumab or ibrutinib has also been shown
From the New England Journal of Medicine 10th December 2023 [i]"The CLL treatment landscape has been transformed by targeted drugs. Continuous BTK inhibitor therapy has improved outcomes in patients with CLL. Fixed-duration venetoclax in combination with obinutuzumab or ibrutinib has also been shown
Jm954
Administrator
in
CLL Support
7 months ago
Relapse vs flare
Hi, I have GPA. Two years ago I reached remission with rituximab prednisone and now on azathioprine. I've been feeling not quite right for a little and have bloods done every 4 weeks to keep an eye on me. I had a phonecall from my rheumatology nurse the other day saying my inflammatory markers are raised
Hi, I have GPA. Two years ago I reached remission with rituximab prednisone and now on azathioprine. I've been feeling not quite right for a little and have bloods done every 4 weeks to keep an eye on me. I had a phonecall from my rheumatology nurse the other day saying my inflammatory markers are raised
Vqueen
in
Vasculitis UK
1 year ago
Rituximab IV
I am starting Rituximab IV next week and wondered if anyone in the community has had this before. Over this month I have had so much IV steroids the side effects has been terrible. This infusion takes all day, so in hospital again for 6 to 8 hours. Just wanted to ask if anyone has had this medication
I am starting Rituximab IV next week and wondered if anyone in the community has had this before. Over this month I have had so much IV steroids the side effects has been terrible. This infusion takes all day, so in hospital again for 6 to 8 hours. Just wanted to ask if anyone has had this medication
Bagpuss2021
in
NRAS
1 year ago
R-CHOP Treatment
After FCR chemo 15 years ago and numerous oral medications since I am in chemo again. They tried a milder chemo to reduce my lymph nodes (they were huge). Some success, but not as much as I needed. So now I've had one round of R-CHOP. All that it has done for me so far is take my wbc's to 0.4. I'm
After FCR chemo 15 years ago and numerous oral medications since I am in chemo again. They tried a milder chemo to reduce my lymph nodes (they were huge). Some success, but not as much as I needed. So now I've had one round of R-CHOP. All that it has done for me so far is take my wbc's to 0.4. I'm
scorpio74944
in
CLL Support
8 months ago
secondary cancers
Hello I recently read an abstract on 6 year follow up of Ven + Obin. About 20% developed secondary cancers, half of these succumbed to these. The abstract did not address what types of cancers nor recommend specific screening. Does anyone have any DATA on 1. How this 20% compares to CLL patients
Hello I recently read an abstract on 6 year follow up of Ven + Obin. About 20% developed secondary cancers, half of these succumbed to these. The abstract did not address what types of cancers nor recommend specific screening. Does anyone have any DATA on 1. How this 20% compares to CLL patients
skipro
in
CLL Support
8 months ago
Rituximab and Flu/Cold
Hello good people. Any tips on dealing with a cold while on Rituximab. Do the same guidelines for Covid apply? Many thanks 😊
Hello good people. Any tips on dealing with a cold while on Rituximab. Do the same guidelines for Covid apply? Many thanks 😊
ks1966
in
NRAS
1 year ago
My CLL Specialist seemed concerned. I need help understanding test results.
Hi my CLL was diagnosed in Sept. 2021. I was treated for AIHA in January 2022 with rituximab which got me back running. I have lost a lot of my fitness since then. My recent results (my interpretation) indicate disease progression. I could use some help figuring out what my test results mean. Thank
Hi my CLL was diagnosed in Sept. 2021. I was treated for AIHA in January 2022 with rituximab which got me back running. I have lost a lot of my fitness since then. My recent results (my interpretation) indicate disease progression. I could use some help figuring out what my test results mean. Thank
SantaZia
in
CLL Support
1 year ago
Tumor Lysis Syndrome: What ( CLL ) Patients Need to Know (Leukemia and Lymphoma Society podcast)
Many of us are aware of the risk of tumor lysis syndrome (TLS) when we commence treatment, particularly with venetoclax and that the purpose of the venetoclax ramp-up, is to reduce the risk of TLS occurring. TLS can also occur with other CLL treatments, especially when they are fast acting, rapidly killing
Many of us are aware of the risk of tumor lysis syndrome (TLS) when we commence treatment, particularly with venetoclax and that the purpose of the venetoclax ramp-up, is to reduce the risk of TLS occurring. TLS can also occur with other CLL treatments, especially when they are fast acting, rapidly killing
AussieNeil
Partner
in
CLL Support
1 year ago
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