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RoActemera (tocilizumab) and headaches
after years of struggling with dcss I finally got the use of RoActemera approved. I’m 6 weeks n in noticing subtle changes already, altho it can take up to 6 months. I do a weekly injection. Problem is about 3 weeks ago I started with awful headaches n in the last week I’ve had 3 episodes that have been
after years of struggling with dcss I finally got the use of RoActemera approved. I’m 6 weeks n in noticing subtle changes already, altho it can take up to 6 months. I do a weekly injection. Problem is about 3 weeks ago I started with awful headaches n in the last week I’ve had 3 episodes that have been
momo17
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
Covid 19 and Rituximab
Hi all I hope you are all keeping well,I am writing today to see I anyone has any answers or info on my Situation.I have had covid 19 which I caught the last day I was in hospital, that was 21 days ago and still positive. I have had Rituximab at beginning of the year, the covid symptoms I have mostly
Hi all I hope you are all keeping well,I am writing today to see I anyone has any answers or info on my Situation.I have had covid 19 which I caught the last day I was in hospital, that was 21 days ago and still positive. I have had Rituximab at beginning of the year, the covid symptoms I have mostly
sorefeetsoldier
in
Vasculitis UK
1 year ago
Covid vaccine and rituximab
Hi All Can someone tell me please what is the time frame after having a covid jab that rituximab can be given? Many thanks
Hi All Can someone tell me please what is the time frame after having a covid jab that rituximab can be given? Many thanks
Galaxy2
in
Vasculitis UK
1 year ago
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Doctor mentioned Richters???
I am on the Bruin trial and was randomized to Arm B which is Idelalisib and Rituximab ( 6 months of infusions ). My bloodwork so far has shown slight improvement since the start in January of this year. Now at my last blood work and appointment the doctor has noticed some lymph nodes increasing in size
I am on the Bruin trial and was randomized to Arm B which is Idelalisib and Rituximab ( 6 months of infusions ). My bloodwork so far has shown slight improvement since the start in January of this year. Now at my last blood work and appointment the doctor has noticed some lymph nodes increasing in size
rcusher
in
CLL Support
1 year ago
What happens if I refuse a treatment?
Hi, I have seropositive Rheumatoid Arthritis and am currently on methotrexate and Rituximab infusions. I would like to know if anyone has ever refused treatment before and how that works. Essentially the hospital I am under keep loosing my paperwork and every year it is a battle to get my Rituximab infusions
Hi, I have seropositive Rheumatoid Arthritis and am currently on methotrexate and Rituximab infusions. I would like to know if anyone has ever refused treatment before and how that works. Essentially the hospital I am under keep loosing my paperwork and every year it is a battle to get my Rituximab infusions
JulezH
in
NRAS
1 year ago
Viral infection to Covid and Flu booster gap.
Diag 2015. FCR 2018, 2023 still in full remission (FISH), My Lymphocyte count is 0.8. I am hypogammaglobulinaemic - IgA, G and M. I have been very fortunate in not having any infection since before diagnosis. Six weeks ago I became suddenly very unwell over the space of 2 hours. What followed was
Diag 2015. FCR 2018, 2023 still in full remission (FISH), My Lymphocyte count is 0.8. I am hypogammaglobulinaemic - IgA, G and M. I have been very fortunate in not having any infection since before diagnosis. Six weeks ago I became suddenly very unwell over the space of 2 hours. What followed was
JigFettler
Volunteer
in
CLL Support
8 months ago
Change to Rituximab
Hello lovely people. I'm dithering as the Amgevita I've been taking for the last six months has worked amazingly well, but with some side effects I can't tolerate. I have now been offered Rituximab and, looking at all the side effects I've scared myself silly. I'm not needle phobic when it's the auto-inject
Hello lovely people. I'm dithering as the Amgevita I've been taking for the last six months has worked amazingly well, but with some side effects I can't tolerate. I have now been offered Rituximab and, looking at all the side effects I've scared myself silly. I'm not needle phobic when it's the auto-inject
Gnarli
in
NRAS
1 year ago
moving on to next treatment-considering Nurex
I have had CLL for 25 yrs with not the greatest genetics/markers TP 53, 13q unmutated. Have had multiple treatments FCR,Bent&R,Ibrutinib and most recently clin trial Loxo 305 (40 months) numbers are changing along with resistance (mut PLg2). I know several members are on degrader (nurex) trial and would
I have had CLL for 25 yrs with not the greatest genetics/markers TP 53, 13q unmutated. Have had multiple treatments FCR,Bent&R,Ibrutinib and most recently clin trial Loxo 305 (40 months) numbers are changing along with resistance (mut PLg2). I know several members are on degrader (nurex) trial and would
Osprey69
in
CLL Support
9 months ago
Jak2 Inhibitors
Hi I was wondering what your experience of these drugs are. My Rheumy is considering putting me on them. I was on enbrel for 17 years till it stopped working. I’ve been o. Rituximab for 18 months but it doesn’t really help and my R.a. D damage has deteriorated. I would really appreciate your comments
Hi I was wondering what your experience of these drugs are. My Rheumy is considering putting me on them. I was on enbrel for 17 years till it stopped working. I’ve been o. Rituximab for 18 months but it doesn’t really help and my R.a. D damage has deteriorated. I would really appreciate your comments
debjw
in
NRAS
1 year ago
An indicator in the blood could guide lupus treatment
A clinical trial (called “BEAT-Lupus”) has found that using a combination of two biologic treatments, rituximab and belimumab, may be more effective than using rituximab alone in patients who have not responded well to other treatment. They also found that people with a particular indicator in their
A clinical trial (called “BEAT-Lupus”) has found that using a combination of two biologic treatments, rituximab and belimumab, may be more effective than using rituximab alone in patients who have not responded well to other treatment. They also found that people with a particular indicator in their
Debbie_kinsey
Administrator
in
LUPUS UK
1 year ago
mild struggles
hi. It’s been seven years since I was on this site. Diagnosed 2007. FCR. Then again in 2012. Various treatments. 2014 ibrutinib. 2016 Venetoclax and obinutuzumab on trial. It worked. 2021 CLL back in bone marrow. Now starting to grow slowly. Haemaglobin only 13. I like more. I’m 54.
hi. It’s been seven years since I was on this site. Diagnosed 2007. FCR. Then again in 2012. Various treatments. 2014 ibrutinib. 2016 Venetoclax and obinutuzumab on trial. It worked. 2021 CLL back in bone marrow. Now starting to grow slowly. Haemaglobin only 13. I like more. I’m 54.
Corin850
in
CLL Support
9 months ago
Sjogrens and Eyes
Hi, I have Sjogrens and Lupus. On Rituximab Infusions. I was wondering if anyone has had little dots floating across their eye. ( just my right eye at the moment. ) I have the usual dry eyes and photosensitivity which has been very annoying of late. I find lights in shops very hard on eyes. I wear
Hi, I have Sjogrens and Lupus. On Rituximab Infusions. I was wondering if anyone has had little dots floating across their eye. ( just my right eye at the moment. ) I have the usual dry eyes and photosensitivity which has been very annoying of late. I find lights in shops very hard on eyes. I wear
Haired
in
Sjogren's Support
1 year ago
Rituximab
Hi all. I am 100+ days post transplant for AML. Doing well, driving, walking, working. Have been told though that a blood test has flagged up positive for the virus that causes glandular fever and they want me to have rituximab IV treatment in outpatients at Bham. Has anybody else had similar treatment
Hi all. I am 100+ days post transplant for AML. Doing well, driving, walking, working. Have been told though that a blood test has flagged up positive for the virus that causes glandular fever and they want me to have rituximab IV treatment in outpatients at Bham. Has anybody else had similar treatment
Platelets2022
in
Leukaemia CARE
1 year ago
Treatment of PMR - Rituximab as a glucocorticoid sparing agent.
1-year results of treatment with rituximab in polymyalgia rheumatica: an extension study of a randomised double-blind placebo-controlled https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(23)00032-2/fulltext?dgcid=raven_jbs_aip_email After a single dose of rituximab (1000 mg), the proportion
1-year results of treatment with rituximab in polymyalgia rheumatica: an extension study of a randomised double-blind placebo-controlled https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(23)00032-2/fulltext?dgcid=raven_jbs_aip_email After a single dose of rituximab (1000 mg), the proportion
Exflex
in
PMRGCAuk
1 year ago
Rituximab infusion
Hi all, have my infusion tomorrow but have a slight cold with some mucus being coughed up and am worried if the infusion can still go ahead, your thoughts and knowledge please as I have to be at addenbrooke's at 8-50 am.
Hi all, have my infusion tomorrow but have a slight cold with some mucus being coughed up and am worried if the infusion can still go ahead, your thoughts and knowledge please as I have to be at addenbrooke's at 8-50 am.
Cookyboy1
in
Vasculitis UK
1 year ago
What’s next?
I was diagnosed, in December of 2018, with CLL and placed on W&W. Less than a year later I started FCR. After completing FCR my blood counts rose steadily until I reached stage 4 which led to two years of Venclexta (400mg daily) treatments. Throughout all treatments I’ve had monthly bloodwork, yearly
I was diagnosed, in December of 2018, with CLL and placed on W&W. Less than a year later I started FCR. After completing FCR my blood counts rose steadily until I reached stage 4 which led to two years of Venclexta (400mg daily) treatments. Throughout all treatments I’ve had monthly bloodwork, yearly
Pokerguy
in
CLL Support
10 months ago
Advice on Rituximab
Hi everyone, I'm struggling a bit with making a decision and I'd really appreciate some thoughts on this. I saw the registrar a few weeks ago and my rash (suspected to be the SCLE rash) has been flaring and a few other symptoms too been going on for about 6 months. The dr asked me what has helped in
Hi everyone, I'm struggling a bit with making a decision and I'd really appreciate some thoughts on this. I saw the registrar a few weeks ago and my rash (suspected to be the SCLE rash) has been flaring and a few other symptoms too been going on for about 6 months. The dr asked me what has helped in
BookishVibes
in
LUPUS UK
1 year ago
Tocilizumab for systemic sclerosis (with mild ILD) - any skin improvement?
Hello dear community, I have systemic sclerosis with mild ILD. Although my lung fibrosis is mild, my skin situation is getting worse. Initially I was recommended to start Rituximab (both by rheumatologist and respiratory doctor) , now a few days ago I received a call from Dr. to tell me that the final
Hello dear community, I have systemic sclerosis with mild ILD. Although my lung fibrosis is mild, my skin situation is getting worse. Initially I was recommended to start Rituximab (both by rheumatologist and respiratory doctor) , now a few days ago I received a call from Dr. to tell me that the final
FelixFelicis
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
acalabrutinib and tegretol
Hi everyone My 70-year-old father had FCR five years ago, with great results. We’ve just been advised he needs to start treatment again, and they’ve chosen Acalabrutinib. He has been advised he had to go off his medication for epilepsy, which is Tegretol. We’re obviously not thrilled about it but
Hi everyone My 70-year-old father had FCR five years ago, with great results. We’ve just been advised he needs to start treatment again, and they’ve chosen Acalabrutinib. He has been advised he had to go off his medication for epilepsy, which is Tegretol. We’re obviously not thrilled about it but
MelaniePet
in
CLL Support
10 months ago
‘Tame The Beast’ ….. I’m sharing for anyone who’s never seen this & am interested in your thoughts ….. https://youtu.be/ikUzvSph7Z4
I was told about this a few days ago by the APP (Advanced Physio Practitioner) at my GP surgery, (It may well be already on Lupus UK somewhere). Yes, neuropathic pain was explained to me a long time ago plus I learned all about how pain is transmitted to the brain during Human Biology lessons approx
I was told about this a few days ago by the APP (Advanced Physio Practitioner) at my GP surgery, (It may well be already on Lupus UK somewhere). Yes, neuropathic pain was explained to me a long time ago plus I learned all about how pain is transmitted to the brain during Human Biology lessons approx
Turquoise-1
in
LUPUS UK
1 year ago
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