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RA Bad in Feet - But Feet Not in DAS - So No New Meds
I’ve had RA for 5 years and been on sulfasalazine and methotrexate, but the ends of both my feet and all the toes are red and swollen and it’s becoming painful to walk. They have been swollen for coming up to 4 years and the Rheumy doctor is pretty sure it’s RA. I’ve tried an anti-TNF inhibitor adalimumab
I’ve had RA for 5 years and been on sulfasalazine and methotrexate, but the ends of both my feet and all the toes are red and swollen and it’s becoming painful to walk. They have been swollen for coming up to 4 years and the Rheumy doctor is pretty sure it’s RA. I’ve tried an anti-TNF inhibitor adalimumab
Jimminey
in
NRAS
1 year ago
Being Positive and Supportive
As I read all the kind responses to my post about finally feeling better I realize the best way to support this group and the best medicine for me and my family is to be positive, hopeful and upbeat. During the FCR treatment in 2018 I was just that! Then after 11 skin cancer surgeries, Covid, and many
As I read all the kind responses to my post about finally feeling better I realize the best way to support this group and the best medicine for me and my family is to be positive, hopeful and upbeat. During the FCR treatment in 2018 I was just that! Then after 11 skin cancer surgeries, Covid, and many
skipro
in
CLL Support
1 year ago
MRD blood test after Venetoclax treatment
I finished Venetoclax treatment last year in the uk. My haematologist is awaiting the result of a MRD blood test and if negative then he tells me I will be discharged. Bit of a surprise to me as I was diagnosed in 2004 and have been routinely monitored since then. I had FCR treatment in 2014. My blood
I finished Venetoclax treatment last year in the uk. My haematologist is awaiting the result of a MRD blood test and if negative then he tells me I will be discharged. Bit of a surprise to me as I was diagnosed in 2004 and have been routinely monitored since then. I had FCR treatment in 2014. My blood
yorkie19
in
CLL Support
1 year ago
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STEP ONE OF MY THIRD CLINICAL TRIAL huCAR-T19 IL-18
With the ink barely dry on my clinical trial consent forms, it was back up to Penn Medicine for my blood collection. First stop was the radiology dept to have a neck catheter installed, I decided against the arm extraction method, as it limits your mobility during the procedure. Cath installation complete
With the ink barely dry on my clinical trial consent forms, it was back up to Penn Medicine for my blood collection. First stop was the radiology dept to have a neck catheter installed, I decided against the arm extraction method, as it limits your mobility during the procedure. Cath installation complete
steve5441
in
CLL Support
1 year ago
tapering off azathioprine
Hi all, Just had a consultation with my rheumatologist today and he has changed his outline for me going forward that you may find interesting I was diagnosed with GPA in 2017 and was quite severe at time of diagnosis. Initially had cyclophosphamide infusions and have been maintained on azathioprine
Hi all, Just had a consultation with my rheumatologist today and he has changed his outline for me going forward that you may find interesting I was diagnosed with GPA in 2017 and was quite severe at time of diagnosis. Initially had cyclophosphamide infusions and have been maintained on azathioprine
stuc
in
Vasculitis UK
1 year ago
PICC line or not
hello every one I read every ones post everyday so hoping you can give me some advice . I had FCR in 2016/2017 which I struggled with the last 3 months of treatment, I started on acalabrutanib but after 1 week had to stop due to severe bone pain , so severe I couldn’t get out of bed or a chair , was
hello every one I read every ones post everyday so hoping you can give me some advice . I had FCR in 2016/2017 which I struggled with the last 3 months of treatment, I started on acalabrutanib but after 1 week had to stop due to severe bone pain , so severe I couldn’t get out of bed or a chair , was
mush56
in
CLL Support
1 year ago
WBC Count - I am a bit confused
Hi everybody and hope all is well in the Team. Now its not difficult to get me confused but I really could do with some advice on this one. I fully understand how Rituximab depletes “B Cells” therefore reducing possible responses to infections etc. I also know there are different types of B cells I.e
Hi everybody and hope all is well in the Team. Now its not difficult to get me confused but I really could do with some advice on this one. I fully understand how Rituximab depletes “B Cells” therefore reducing possible responses to infections etc. I also know there are different types of B cells I.e
Investigator1
in
Vasculitis UK
1 year ago
Compromised Immunity: So What Does That Really Mean?
Greetings to all my CLL friends! I rarely post questions because I usually find answers to any questions just by reading posts from this forum. Today I do have a question…. I was diagnosed with CLL in 2006. Have had two courses of Rituximab (2006 and again in 2015). Relapsed again in 2022 with added
Greetings to all my CLL friends! I rarely post questions because I usually find answers to any questions just by reading posts from this forum. Today I do have a question…. I was diagnosed with CLL in 2006. Have had two courses of Rituximab (2006 and again in 2015). Relapsed again in 2022 with added
P-klenclo
in
CLL Support
1 year ago
The bumpy journey of a relapsed CLL with a weird and confusing chest CT scan
A year ago I had a CT scan to assess my CLL which confirmed my anxieties that I was beginning to relapse. In April/May it became very clear that I would need to start treatment very soon due to a low HB(70) and low platelets (32) I was covered in bruises, lacked energy to be able to teach for a full
A year ago I had a CT scan to assess my CLL which confirmed my anxieties that I was beginning to relapse. In April/May it became very clear that I would need to start treatment very soon due to a low HB(70) and low platelets (32) I was covered in bruises, lacked energy to be able to teach for a full
Bethan49
in
CLL Support
1 year ago
2 New Meds Found to Completely Change Lupus Nephritis Treatment
2 New Meds Found to Completely Change Lupus Nephritis Treatment Analysis shows greater use of Lupkynis, sharp drop in rituximab The approvals of new medications in the last few years have dramatically shifted the treatment landscape for lupus nephritis, a severe manifestation of lupus characterized
2 New Meds Found to Completely Change Lupus Nephritis Treatment Analysis shows greater use of Lupkynis, sharp drop in rituximab The approvals of new medications in the last few years have dramatically shifted the treatment landscape for lupus nephritis, a severe manifestation of lupus characterized
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
1 year ago
shall I go for the rituximab?
Hi all, I’m looking for people’s experiences with rituximab. I’ve had to come off tocilizumab after developing diverticular disease and I’ve been offered rituximab. I’ve heard scary things in the past about this so I was hoping to hear how people have found this drug. Many thanks 😊
Hi all, I’m looking for people’s experiences with rituximab. I’ve had to come off tocilizumab after developing diverticular disease and I’ve been offered rituximab. I’ve heard scary things in the past about this so I was hoping to hear how people have found this drug. Many thanks 😊
Springerfan
in
NRAS
1 year ago
FDA Approves Zanubrutinib for Chronic Lymphocytic Leukemia or Small Lymphocytic Lymphom
FDA Approves Zanubrutinib for Chronic Lymphocytic Leukemia or Small Lymphocytic Lymphoma Jan 19, 2023 By Caroline Seymour https://www.onclive.com/view/fda-approves-zanubrutinib-for-chronic-lymphocytic-leukemia-or-small-lymphocytic-lymphoma The FDA has approved zanubrutinib for the treatment of patients
FDA Approves Zanubrutinib for Chronic Lymphocytic Leukemia or Small Lymphocytic Lymphoma Jan 19, 2023 By Caroline Seymour https://www.onclive.com/view/fda-approves-zanubrutinib-for-chronic-lymphocytic-leukemia-or-small-lymphocytic-lymphoma The FDA has approved zanubrutinib for the treatment of patients
lankisterguy
Volunteer
in
CLL Support
1 year ago
What to do hmmmmm
Hi all, I have two options after progressing on IB after four years. A) LOXO 305 Trial (Bruin 321) Or B) Venetoclax and Rituximab Being 17p deleted I was thinking of going forward with Option A assuming I was selected. But maybe Option B would be easier since they’ve already been approved . Just
Hi all, I have two options after progressing on IB after four years. A) LOXO 305 Trial (Bruin 321) Or B) Venetoclax and Rituximab Being 17p deleted I was thinking of going forward with Option A assuming I was selected. But maybe Option B would be easier since they’ve already been approved . Just
steve_canada
in
CLL Support
1 year ago
Rituximab/ Covid
Hello. I took my Rituximab infusion last week and I’m worried about getting Covid in the future again Can anyone on Rituximab who caught Covid share their experience with me. Thanks
Hello. I took my Rituximab infusion last week and I’m worried about getting Covid in the future again Can anyone on Rituximab who caught Covid share their experience with me. Thanks
ks1966
in
NRAS
1 year ago
absence from work
has anyone ever been dismissed from work due to rheumatoid related absence? I’m in the process of trying to get better meds as the rituximab hasn’t worked that well and I’ve had to go off work every time it’s started to wear off while I wait for my infusion. I’ve now been give leflunomide too to try
has anyone ever been dismissed from work due to rheumatoid related absence? I’m in the process of trying to get better meds as the rituximab hasn’t worked that well and I’ve had to go off work every time it’s started to wear off while I wait for my infusion. I’ve now been give leflunomide too to try
Natikins
in
NRAS
1 year ago
CLL Society interview - Dr. Shahzad Mustafa on What it Means to be Immunocompromised for Patients with CLL/SLL January 13, 2023
Dr. Shahzad Mustafa on What it Means to be Immunocompromised for Patients with CLL/SLL January 13, 2023 https://cllsociety.org/2023/01/dr-shahzad-mustafa-on-what-it-means-to-be-immunocompromised-for-patients-with-cll-sll/ https://youtu.be/DSOKTmffc-s - In this interview, Dr. Brian Koffman spoke
Dr. Shahzad Mustafa on What it Means to be Immunocompromised for Patients with CLL/SLL January 13, 2023 https://cllsociety.org/2023/01/dr-shahzad-mustafa-on-what-it-means-to-be-immunocompromised-for-patients-with-cll-sll/ https://youtu.be/DSOKTmffc-s - In this interview, Dr. Brian Koffman spoke
lankisterguy
Volunteer
in
CLL Support
1 year ago
Starting Venetoclax next week
Hi everyone,I found out today that I am to start Venetoclax next week and Rituximab 6 weeks later for a total of 6 months. I was diagnosed in 2018, had 6 months of FCR in 2019 which went pretty smoothly except for severe Neutropenia. I feel fine and my bloods are within normal range. My TP53 is negative
Hi everyone,I found out today that I am to start Venetoclax next week and Rituximab 6 weeks later for a total of 6 months. I was diagnosed in 2018, had 6 months of FCR in 2019 which went pretty smoothly except for severe Neutropenia. I feel fine and my bloods are within normal range. My TP53 is negative
Floxxy
in
CLL Support
1 year ago
Heard of the Biologic Ocreluzimab (Ocrevus) used for treating MCTD/RA?
Happy New Year to all RA warriors. Onwards & upwards for 2023🙏 My daughter with MCTD was offered Ocreluzimab following a near anaphylactic reaction to the 2nd dose of the 2nd cycle of Rituximab in April 2021She had the 1st 2 primary infusion of Ocreluzimab in March 2022 with no ill effects & seemed
Happy New Year to all RA warriors. Onwards & upwards for 2023🙏 My daughter with MCTD was offered Ocreluzimab following a near anaphylactic reaction to the 2nd dose of the 2nd cycle of Rituximab in April 2021She had the 1st 2 primary infusion of Ocreluzimab in March 2022 with no ill effects & seemed
Wangpaupau
in
NRAS
1 year ago
Immunocompromised
I’m currently in a clinical trial receiving infusions of a drug similar to rituximab, and therefore immunocompromised. I am a public employee and in a battle with my employer. I was working remotely for 2 years, and my job is easily accomplished remotely. They are now requiring me to come back full
I’m currently in a clinical trial receiving infusions of a drug similar to rituximab, and therefore immunocompromised. I am a public employee and in a battle with my employer. I was working remotely for 2 years, and my job is easily accomplished remotely. They are now requiring me to come back full
MsAmyM
in
Kidney Disease
1 year ago
Rituximab
Hi all!Can anyone tell me why rituximab treatments are restricted, I was told, to 2 years? I realise cost is involved, but I had my treatments in france, but was still refused it here in the uk. Back on Methotrexate now..
Hi all!Can anyone tell me why rituximab treatments are restricted, I was told, to 2 years? I realise cost is involved, but I had my treatments in france, but was still refused it here in the uk. Back on Methotrexate now..
sarahdollygirl
in
Vasculitis UK
1 year ago
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