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Question
If one responds well to rituximab/venetoclax w/o relapse, why stop the drug at two years? Thanks, Bud
If one responds well to rituximab/venetoclax w/o relapse, why stop the drug at two years? Thanks, Bud
Agiledog
in
CLL Support
2 months ago
CLL survival times ARE improving, thanks to BTK and BCL-2 inhibitors
Many of us were shocked after our CLL/SLL diagnosis when we googled for survival times. [u]Hopefully[/u] we subsequently read that search engine information from Google, Bing, etc., is way out of date, due to the fact that with CLL being a chronic disease, the relatively long survival times with this
Many of us were shocked after our CLL/SLL diagnosis when we googled for survival times. [u]Hopefully[/u] we subsequently read that search engine information from Google, Bing, etc., is way out of date, due to the fact that with CLL being a chronic disease, the relatively long survival times with this
AussieNeil
Administrator
in
CLL Support
2 months ago
Help with rehab at home after acute phase of autoimmune encephalitis for my 16 year old
I am mum to a 16 year old daughter who has recently been diagnosed with autoimmune encephalitis. After several weeks in and out of A&E and several other departments, where they thought it was psychological, we were referred to the neurologists by the psychiatrist who after several tests diagnosed AE
I am mum to a 16 year old daughter who has recently been diagnosed with autoimmune encephalitis. After several weeks in and out of A&E and several other departments, where they thought it was psychological, we were referred to the neurologists by the psychiatrist who after several tests diagnosed AE
Cat29red
in
Encephalitis Society
2 months ago
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PEP for asthma
Morning. Due to being immunocompromised …on Rituximab infusion. I keep getting the same chest infection. Had three lots of antibiotics over 4 weeks. I was considering buying a PEP to try and keep my chest clear. Has anyone any advice on which to buy please? TIA
Morning. Due to being immunocompromised …on Rituximab infusion. I keep getting the same chest infection. Had three lots of antibiotics over 4 weeks. I was considering buying a PEP to try and keep my chest clear. Has anyone any advice on which to buy please? TIA
Evie3
in
Asthma Community Forum
2 months ago
anti NMDA encephalitis
Hi! My husband had HSV1 encephalitis in March-April 2023, then anti NMDA encephalitis May-August 2023. He had the steroids, the plasma exchange but it was the Rituximab that finally got it sorted. I’m just looking to connect with anyone that has suffered with it or their families?! We don’t have
Hi! My husband had HSV1 encephalitis in March-April 2023, then anti NMDA encephalitis May-August 2023. He had the steroids, the plasma exchange but it was the Rituximab that finally got it sorted. I’m just looking to connect with anyone that has suffered with it or their families?! We don’t have
AntiNMDAWarriorWife
in
Headway
2 months ago
Rituximab and pets
Good day, everyone. I’m currently undergoing treatment with Rituximab and am considering adopting a cat. I would appreciate any insights regarding the risk of increased infections or other concerns related to these furry companions. Thank you.
Good day, everyone. I’m currently undergoing treatment with Rituximab and am considering adopting a cat. I would appreciate any insights regarding the risk of increased infections or other concerns related to these furry companions. Thank you.
ks1966
in
NRAS
2 months ago
does everyone take methotrexate?
hi all, I’ve been having a bit of a rough ride with RA recently, i don’t seem to be able to get my condition under very good control unless I take methotrexate with a biologic. I took methotrexate for 10 years (tolerated but lots of side effects) but then after 10 years the side effects became too
hi all, I’ve been having a bit of a rough ride with RA recently, i don’t seem to be able to get my condition under very good control unless I take methotrexate with a biologic. I took methotrexate for 10 years (tolerated but lots of side effects) but then after 10 years the side effects became too
Claire32
in
NRAS
2 months ago
Any one here with this particular ANA ?
I had just had a set of Rituximab 5 days prior, so my antibodies should have been really knocked down. My anti cardiolipin was still a bit elevated at 26 I think. ( usually it’s down from 38 to 0. ) I actually don’t know anything about this antibody- I read the SS is Sjögren specific? Is that right
I had just had a set of Rituximab 5 days prior, so my antibodies should have been really knocked down. My anti cardiolipin was still a bit elevated at 26 I think. ( usually it’s down from 38 to 0. ) I actually don’t know anything about this antibody- I read the SS is Sjögren specific? Is that right
KellyInTexas
Administrator
in
Hughes Syndrome APS Forum
3 months ago
Rheumatoid arthritis since 1995
Hi,I was diagnosed with ra 1996,been on various drugs over the years,I'm taken methotrexate self injection and rituximab infusion, I've had 2 operations on my feet joints removed and fused,I'm 65 still working which is a struggle,two year ago I was awarded the lower living pip no mobility pip,how do
Hi,I was diagnosed with ra 1996,been on various drugs over the years,I'm taken methotrexate self injection and rituximab infusion, I've had 2 operations on my feet joints removed and fused,I'm 65 still working which is a struggle,two year ago I was awarded the lower living pip no mobility pip,how do
Justlucy
in
NRAS
3 months ago
Rituximab and hair loss
Hello, I've just had my first two doses of Rituximab in February, and I've been noticing more hair loss when I wash my hair. Has anyone had this, and do you have any remedies? I have fine hair too. I'm on a mix of methotrexate, prednisolone and hydroxychloroquine. Many thanks!
Hello, I've just had my first two doses of Rituximab in February, and I've been noticing more hair loss when I wash my hair. Has anyone had this, and do you have any remedies? I have fine hair too. I'm on a mix of methotrexate, prednisolone and hydroxychloroquine. Many thanks!
poppies_are_red
in
LUPUS UK
3 months ago
Selbourn
Two weeks ago I was given, what the Rummy called a maintenance dose, of Rituximab and of course 125mg of prednisone first. All good apart from little sleep after the Pred! But now OK but very tired all the time could be the ANCA or the meds who knows. I am also having very vivid bad dreams, is anyone
Two weeks ago I was given, what the Rummy called a maintenance dose, of Rituximab and of course 125mg of prednisone first. All good apart from little sleep after the Pred! But now OK but very tired all the time could be the ANCA or the meds who knows. I am also having very vivid bad dreams, is anyone
Selbourn
in
Vasculitis UK
3 months ago
Covid Vaccines - Update
Hi All I’ve been trying to find out when we’re next due a vaccine as I’m also due another dose of rituximab and was hoping to get it done first. Just seen an update on the NHS website , immune suppressed will be offered from April.
Hi All I’ve been trying to find out when we’re next due a vaccine as I’m also due another dose of rituximab and was hoping to get it done first. Just seen an update on the NHS website , immune suppressed will be offered from April.
Galaxy2
in
Vasculitis UK
3 months ago
rituximab
my rheumatologist has booked me in for an infusion of Rituximab. I have been on a low dose of methotrexate for a few years but the last six months I have struggled and my doctor is reluctant to upbthe methotrexate dosage because of my liver. Any tips / advice / experience to share about Rituximab?
my rheumatologist has booked me in for an infusion of Rituximab. I have been on a low dose of methotrexate for a few years but the last six months I have struggled and my doctor is reluctant to upbthe methotrexate dosage because of my liver. Any tips / advice / experience to share about Rituximab?
Pange63
in
NRAS
3 months ago
Vasculitis
Is it OK to have a tooth extraction 2 weeks after Rituximab infusion?
Is it OK to have a tooth extraction 2 weeks after Rituximab infusion?
EbonyWillow
in
Vasculitis UK
3 months ago
Avacopan and Pred
Hi, I had my first rituximab infusion last Tuesday. I have been supplied Avacopan, but still have Pred 40mg a day. No one has told me to stop Pred before starting Avacopan. Unsure if I should be stopping dead or finishing up existing tablets/tapering? I will try and get hold of someone tomorrow
Hi, I had my first rituximab infusion last Tuesday. I have been supplied Avacopan, but still have Pred 40mg a day. No one has told me to stop Pred before starting Avacopan. Unsure if I should be stopping dead or finishing up existing tablets/tapering? I will try and get hold of someone tomorrow
lollypocket
in
Vasculitis UK
3 months ago
Rituximab infusion tomorrow !!
Hello, this is a little last minute. But I have my first rituximab infusion tomorrow, I was wondering if anyone had any tips logistics-wise. Also, do they expect you to lie still for 6 hours and can you go to the bathroom? I figured I'd bring lunch, a jacket, a book, or a sketchbook and listen to music
Hello, this is a little last minute. But I have my first rituximab infusion tomorrow, I was wondering if anyone had any tips logistics-wise. Also, do they expect you to lie still for 6 hours and can you go to the bathroom? I figured I'd bring lunch, a jacket, a book, or a sketchbook and listen to music
poppies_are_red
in
LUPUS UK
4 months ago
Rituximab experience?
Hi all. I have had large vessel vasculitis for over three years which, despite several different treatments, is proving difficult to control. An FDG PET CT scan last November showed some inflammation in all areas of my aorta still. I have just started Rituximab infusions. This has made me feel even more
Hi all. I have had large vessel vasculitis for over three years which, despite several different treatments, is proving difficult to control. An FDG PET CT scan last November showed some inflammation in all areas of my aorta still. I have just started Rituximab infusions. This has made me feel even more
Kafkaontheshore
in
Vasculitis UK
4 months ago
Rituximab experience?
Hi all. I have had large vessel vasculitis for over three years which, despite several different treatments, is proving difficult to control. An FDG PET CT scan last November showed some inflammation in all areas of my aorta still. I have just started Rituximab infusions. This has made me feel even more
Hi all. I have had large vessel vasculitis for over three years which, despite several different treatments, is proving difficult to control. An FDG PET CT scan last November showed some inflammation in all areas of my aorta still. I have just started Rituximab infusions. This has made me feel even more
Kafkaontheshore
in
PMRGCAuk
4 months ago
Kidney biopsy confirms active GPA
Hi, Thought I'd update what has happened since my last post. I have seen my rheumatologist twice now, given pred and was put forward for rituximab. Due to the blood and protein in my pee I was referred to renal and had a kidney biopsy on Wednesday of this week. It has been confirmed that my vasculitis
Hi, Thought I'd update what has happened since my last post. I have seen my rheumatologist twice now, given pred and was put forward for rituximab. Due to the blood and protein in my pee I was referred to renal and had a kidney biopsy on Wednesday of this week. It has been confirmed that my vasculitis
lollypocket
in
Vasculitis UK
4 months ago
Why did my infusions get stopped?
I’ve had several Rituximab infusions, usually every 9 months to a year apart; the last one was in 2021. In 2022 I was informed that Rituximab would be replaced by Rituxithon ( I hope that’s right) as its cheaper. I haven’t got a problem with this. In March 2020, the week before lockdown, I went
I’ve had several Rituximab infusions, usually every 9 months to a year apart; the last one was in 2021. In 2022 I was informed that Rituximab would be replaced by Rituxithon ( I hope that’s right) as its cheaper. I haven’t got a problem with this. In March 2020, the week before lockdown, I went
SwimmerBTC
in
NRAS
4 months ago
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