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Advice needed please
I've had GPA for 25 years with 2 relapses. I last had Rituximab in June 21, I then in November had Covid with 2 hospital admissions. I now have long Covid. I cannot have RTmab because my Immune system is so low, Igg 3.4IgA 0.48 IgM 0.42p Yesterday I was walking around and felt extreme fatigue,
I've had GPA for 25 years with 2 relapses. I last had Rituximab in June 21, I then in November had Covid with 2 hospital admissions. I now have long Covid. I cannot have RTmab because my Immune system is so low, Igg 3.4IgA 0.48 IgM 0.42p Yesterday I was walking around and felt extreme fatigue,
Fleen
in
Vasculitis UK
7 months ago
Recurring high temperatures?
Does anyone else get frequent high temperatures? It feels like every other day atleast my temperatures hits 38 or above and palpitations have also returned. GPA current treatment rituximab azathioprine and prednisolone
Does anyone else get frequent high temperatures? It feels like every other day atleast my temperatures hits 38 or above and palpitations have also returned. GPA current treatment rituximab azathioprine and prednisolone
Vqueen
in
Vasculitis UK
7 months ago
Re-introduction
Hello everyone. I've not been active on here for some time, so this is by way of a new introduction! I was diagnosed with GPA in 2012, which made a hole in my nose, and after treatment with cyclophosphamide, azathioprine, and then rituximab, I have now been in remission for several years. The hole in
Hello everyone. I've not been active on here for some time, so this is by way of a new introduction! I was diagnosed with GPA in 2012, which made a hole in my nose, and after treatment with cyclophosphamide, azathioprine, and then rituximab, I have now been in remission for several years. The hole in
suffolkgirl
in
Vasculitis UK
7 months ago
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Pneumonia Vaccine - Who Can Have it?
Hi everybody, it’s been a bit of a tough 10 days. Things have been going well but a week last Thursday I started getting flashes in my left eye and loads of floaters, optician referred me and went to hospital to have laser treatment on some retinal tears, because the NHS have difficulty managing appointments
Hi everybody, it’s been a bit of a tough 10 days. Things have been going well but a week last Thursday I started getting flashes in my left eye and loads of floaters, optician referred me and went to hospital to have laser treatment on some retinal tears, because the NHS have difficulty managing appointments
Investigator1
in
Vasculitis UK
7 months ago
Rituximab
does anyone have any advice about the effect of the COVID vaccine on Rituximab. I had my first infusion in July which has been successful for me and given me a pain free life. So don’t want to ‘mess it up by risking Covid vaccine if it has a negative effect. thanks
does anyone have any advice about the effect of the COVID vaccine on Rituximab. I had my first infusion in July which has been successful for me and given me a pain free life. So don’t want to ‘mess it up by risking Covid vaccine if it has a negative effect. thanks
Welshwomanprestatyn
in
NRAS
7 months ago
Avacopan (Tavneos®) is accepted for use within NHSScotland.
The Scottish Medicines Consortium (SMC) has completed its assessment of Avacopan and, following review by the SMC executive, advises NHS Boards and Area Drug and Therapeutics Committees (ADTCs) on its use in NHSScotland. Full details posted here: https://www.scottishmedicines.org.uk/media/7938/avacopan-tavneos-final-oct
The Scottish Medicines Consortium (SMC) has completed its assessment of Avacopan and, following review by the SMC executive, advises NHS Boards and Area Drug and Therapeutics Committees (ADTCs) on its use in NHSScotland. Full details posted here: https://www.scottishmedicines.org.uk/media/7938/avacopan-tavneos-final-oct
JaneLE
Administrator
in
Vasculitis UK
8 months ago
Anti viral?
Does anyone know if they're still giving anti viral medication for a positive covid patient? I'm on rituximab and azathioprine aswell as prednisolone. I've not yet done a test but have been feeling breathless and coughing more than normal. I'm not allowed to have my covid or flu vaccinations due to
Does anyone know if they're still giving anti viral medication for a positive covid patient? I'm on rituximab and azathioprine aswell as prednisolone. I've not yet done a test but have been feeling breathless and coughing more than normal. I'm not allowed to have my covid or flu vaccinations due to
Vqueen
in
Vasculitis UK
8 months ago
well another drug fail.
Rituximab after 3 months is a failure. I have been so much worse the last 6 weeks unable to walk or use my hands peripheral neuropathy off the scale . Managed to see another rheumatologist at the clinic . 3 infections and bed bound these last 6 weeks. Given a steroid injection and will see me in 2 months
Rituximab after 3 months is a failure. I have been so much worse the last 6 weeks unable to walk or use my hands peripheral neuropathy off the scale . Managed to see another rheumatologist at the clinic . 3 infections and bed bound these last 6 weeks. Given a steroid injection and will see me in 2 months
J1707-
in
NRAS
8 months ago
Oh how I wish I was signposted to this site 18 months ago
I'm going to stick my neck out and say that I enjoy reading the posts here. Why? Because somewhat belatedly, they reassure me that I am not the only one! For those that wonder if things will improve, my story..... It was a Sunday in March 22 that my partner found me collapsed at home with a brain
I'm going to stick my neck out and say that I enjoy reading the posts here. Why? Because somewhat belatedly, they reassure me that I am not the only one! For those that wonder if things will improve, my story..... It was a Sunday in March 22 that my partner found me collapsed at home with a brain
Gurberly
in
ICUsteps
8 months ago
Rituximab
Dear All, My 25 year old daughter with SLE has been asked to start rituximab infusion due to the renal team not being happy with the amount of protein in urine and think her current immune suppressants are no longer effective. May I please ask if anyone is on rituximab and any advice? I attended a
Dear All, My 25 year old daughter with SLE has been asked to start rituximab infusion due to the renal team not being happy with the amount of protein in urine and think her current immune suppressants are no longer effective. May I please ask if anyone is on rituximab and any advice? I attended a
Adiahama
in
LUPUS UK
8 months ago
Hi everyone
My name is Dave and I was diagnosed with MPA Vasculitis around the end of September. I had been having fevers and night sweats that would come and go most days for approx 6 months. Also aching legs and tingly feet. GP had no luck finding the cause for about 3 or 4 months. Then my wife insisted I should
My name is Dave and I was diagnosed with MPA Vasculitis around the end of September. I had been having fevers and night sweats that would come and go most days for approx 6 months. Also aching legs and tingly feet. GP had no luck finding the cause for about 3 or 4 months. Then my wife insisted I should
Reggie999
in
Vasculitis UK
8 months ago
Shingrix vaccine for immunosuppressed people aged 50+
I thought I would just post this from the gov.uk website because I have just a bit of struggle convincing our surgery that I was eligible, so maybe other people haven't been invited either. The full list is on chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://assets.publishing.service.gov.uk
I thought I would just post this from the gov.uk website because I have just a bit of struggle convincing our surgery that I was eligible, so maybe other people haven't been invited either. The full list is on chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://assets.publishing.service.gov.uk
Sharitone
in
PMRGCAuk
8 months ago
Wendy
My husband was diagnosed in 2010 at the age of 40. 2013 he had FCR. 11 years later, he is in week 5 of venteclax, Rituximab to follow next month. Swollen lymph nodes have disappeared.
My husband was diagnosed in 2010 at the age of 40. 2013 he had FCR. 11 years later, he is in week 5 of venteclax, Rituximab to follow next month. Swollen lymph nodes have disappeared.
Fluxthecat10
in
CLL Support
2 months ago
rituximab
Hello All, I hope you are all doing ok. I wondered if anyone has had rituximab infusions for their myositis and what the experience has been like - impact on disease, side effects, infections due to immune suppression, infusion process itself? The rheumatologist has given this as a potential option
Hello All, I hope you are all doing ok. I wondered if anyone has had rituximab infusions for their myositis and what the experience has been like - impact on disease, side effects, infections due to immune suppression, infusion process itself? The rheumatologist has given this as a potential option
ruablue
in
Myositis UK
8 months ago
2nd Dose of Shingrix - How Long After Rituximab?
Hi everybody as mentioned in an earlier post I had my 1st Shingrix Vaccine yesterday, no worries my Consultant told me no closer than a month before my Rituximab, that’s due end of November so job done. When I asked about when I could have the 2nd dose after Rituximab I didn’t get a definitive answer
Hi everybody as mentioned in an earlier post I had my 1st Shingrix Vaccine yesterday, no worries my Consultant told me no closer than a month before my Rituximab, that’s due end of November so job done. When I asked about when I could have the 2nd dose after Rituximab I didn’t get a definitive answer
Investigator1
in
Vasculitis UK
8 months ago
Rituximab
Hello everyone I have not posted before but read the other posts every day I have SLE, osteoporosis, arthiritus, CKD, amoloid and was recently hospitalised with acute fibrosis of the lungs I am In constant pain due to broken bones in spine My Rheumatologist has got me accepted for Rituximab
Hello everyone I have not posted before but read the other posts every day I have SLE, osteoporosis, arthiritus, CKD, amoloid and was recently hospitalised with acute fibrosis of the lungs I am In constant pain due to broken bones in spine My Rheumatologist has got me accepted for Rituximab
Catcon01
in
LUpus Patients Understanding and Support
8 months ago
Update
Just got my blood test results: Testo less 0.1 ng/ML and PSA still undetectable. Tomorrow I’ll receive my next 3-month Lupron shot, which will finalize my 24-month ADT after prostate bed and whole pelvic radiation. In the meantime I also had lymphoma and received four R-CHOP chemo cycles, two cycles
Just got my blood test results: Testo less 0.1 ng/ML and PSA still undetectable. Tomorrow I’ll receive my next 3-month Lupron shot, which will finalize my 24-month ADT after prostate bed and whole pelvic radiation. In the meantime I also had lymphoma and received four R-CHOP chemo cycles, two cycles
Nusch
in
Advanced Prostate Cancer
8 months ago
Lupus & Sjogrens with Rituximab Infusions
Good Morning, I have been on Rituximab Infusions since Jan 2021 ( 6 monthly)just had double Infusion 2 weeks apart. Also on 5mg maint steroids and Mepacrine also Helliocare photosensitivity tablets, blood pressure tablets, folic acid calcichew, Asprin. I had a really bad time this year with photosensitivity
Good Morning, I have been on Rituximab Infusions since Jan 2021 ( 6 monthly)just had double Infusion 2 weeks apart. Also on 5mg maint steroids and Mepacrine also Helliocare photosensitivity tablets, blood pressure tablets, folic acid calcichew, Asprin. I had a really bad time this year with photosensitivity
Haired
in
LUPUS UK
8 months ago
baricitinib over 65
hi I hade a rheumatology appointment last week where I was told that if I was a new patient at 65 I wouldn’t have been given baricinib as new guide lines were that because it could cause coronary problems or some cancers this risk is higher over the age of 65. I was given the option to half the dose
hi I hade a rheumatology appointment last week where I was told that if I was a new patient at 65 I wouldn’t have been given baricinib as new guide lines were that because it could cause coronary problems or some cancers this risk is higher over the age of 65. I was given the option to half the dose
Darwin
in
NRAS
9 months ago
Update.
Latest blood results Hb - 119, WBC - 5.9. Plts- 293. I am starting to feel a bit better of late. The steroids I am on has have improved my haemoglobin and I am reducing the dosage over 4 weeks. I am to stay on folic acid tablets for the mean time. The letter I received states that my haematologist cannot
Latest blood results Hb - 119, WBC - 5.9. Plts- 293. I am starting to feel a bit better of late. The steroids I am on has have improved my haemoglobin and I am reducing the dosage over 4 weeks. I am to stay on folic acid tablets for the mean time. The letter I received states that my haematologist cannot
Jacksc06
in
CLL Support
9 months ago
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