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Measles outbreak
Hi, not sure if I'm being silly so looking for abit of reassurance. I'm on rituximab, azathioprine and prednisolone. I'm up-to-date with vaccinations bit concerned about the measles outbreak in my area. Am I at risk due to being immunocompromised?
Hi, not sure if I'm being silly so looking for abit of reassurance. I'm on rituximab, azathioprine and prednisolone. I'm up-to-date with vaccinations bit concerned about the measles outbreak in my area. Am I at risk due to being immunocompromised?
Vqueen
in
Vasculitis UK
5 months ago
Rituximab
Hi all, well after 6 months on hyrimoz and no improvement they want to start me on Rituximab. Does anyone know how long you have to wait before you can start, ie this wash out period were you have nothing?? The steroid injections have worn off again, inflammation crp up again tiredness back and the
Hi all, well after 6 months on hyrimoz and no improvement they want to start me on Rituximab. Does anyone know how long you have to wait before you can start, ie this wash out period were you have nothing?? The steroid injections have worn off again, inflammation crp up again tiredness back and the
Akaka
in
NRAS
5 months ago
Why are we waiting?
So they gave me my last infusion of rituximab in June 2023. They made no difference to my pain or blood levels. I had zero follow up calls and no further offers of help. The rhemy nurses at the hospital say they won't answer emails or phone calls unless its between 10am and 2pm three days a week.My
So they gave me my last infusion of rituximab in June 2023. They made no difference to my pain or blood levels. I had zero follow up calls and no further offers of help. The rhemy nurses at the hospital say they won't answer emails or phone calls unless its between 10am and 2pm three days a week.My
RootsToots
in
NRAS
5 months ago
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Does anyone have any feedback on Wegener's Gramgranulomatosis?
I have Wegener's and it has primarily affected my eyes and lungs. I've been on rituximab and 25mg methotrexate for two years but I have a host of issues from taking the rituximab.
I have Wegener's and it has primarily affected my eyes and lungs. I've been on rituximab and 25mg methotrexate for two years but I have a host of issues from taking the rituximab.
Youelbeverly
in
NRAS
5 months ago
Hi everyone and Happy New Year
my name is Jill and it’s been along while since I’ve posted anything. I was diagnosed in 1999. Aged 39. Despite being very unwell for months and being ‘fobbed ’ off by my Gp. By the time I was diagnosed I had Saddle Nose deformity. Like alot of you even as a nurse I was very scared and felt alone
my name is Jill and it’s been along while since I’ve posted anything. I was diagnosed in 1999. Aged 39. Despite being very unwell for months and being ‘fobbed ’ off by my Gp. By the time I was diagnosed I had Saddle Nose deformity. Like alot of you even as a nurse I was very scared and felt alone
Essex-jill
in
Vasculitis UK
6 months ago
Rituximab - any advice?
At my rheumatology appointment yesterday my consultant came to the conclusion that amgevita has not worked for me and we agreed I would stop that and start Rituximab. Has this worked well for others? I understand that this is given by infusion every 6 months and wondered how people found that? Thank
At my rheumatology appointment yesterday my consultant came to the conclusion that amgevita has not worked for me and we agreed I would stop that and start Rituximab. Has this worked well for others? I understand that this is given by infusion every 6 months and wondered how people found that? Thank
Bookworm55
in
NRAS
6 months ago
Retuximab
Hi guys, Hope you all had a happy healthy New Year :) Unfortunately I had flu, then Covid and what seemed like a virus :( I just started Rituximab infusion 26th September therefore according to the information booklet I’m not meant to have live vaccines (flu, Covid) for 6months after, hence probably
Hi guys, Hope you all had a happy healthy New Year :) Unfortunately I had flu, then Covid and what seemed like a virus :( I just started Rituximab infusion 26th September therefore according to the information booklet I’m not meant to have live vaccines (flu, Covid) for 6months after, hence probably
jopo280886
in
LUPUS UK
6 months ago
Obinutuzumab not recommended for funding by NHS England
NHS England have not recommended funding obinutuzumab for people with lupus and secondary non-response to rituximab. However, they are prepared to consider it again in the future. You can read more about obinutuzumab and this decision on our website: https://lupusuk.org.uk/obinutuzumab-not-recommended-for-funding-by-nhs-england
NHS England have not recommended funding obinutuzumab for people with lupus and secondary non-response to rituximab. However, they are prepared to consider it again in the future. You can read more about obinutuzumab and this decision on our website: https://lupusuk.org.uk/obinutuzumab-not-recommended-for-funding-by-nhs-england
Debbie_kinsey
Administrator
in
LUPUS UK
6 months ago
More evidence for vaccination
There's another article which confirms that, for most people on DMARDs, having a booster injection against Covid-19 improves the protection against having the infection and having it severely. [i]The effectiveness of a fourth mRNA vaccine dose was associated with a lower risk of a SARS-CoV-2 infection
There's another article which confirms that, for most people on DMARDs, having a booster injection against Covid-19 improves the protection against having the infection and having it severely. [i]The effectiveness of a fourth mRNA vaccine dose was associated with a lower risk of a SARS-CoV-2 infection
oldtimer2
in
NRAS
6 months ago
Gpa chest infection
Hi all, I've been battling a chest infection on day 4 of antibiotics. Already on prednisolone, azathioprine and rituximab. Just doesn't seem to be shifting. Any advice on what to do to help fight the infection? Thanks in advance XX
Hi all, I've been battling a chest infection on day 4 of antibiotics. Already on prednisolone, azathioprine and rituximab. Just doesn't seem to be shifting. Any advice on what to do to help fight the infection? Thanks in advance XX
Vqueen
in
Vasculitis UK
6 months ago
CNS Symptoms and Advice
I’d be so grateful if anyone with cns involvement can offer their experiences. I haven’t got a neurologist to ask advice from at the moment, I’m really hoping to see one early next year , hopefully, but I haven’t got an appointment yet. I have a great Gp, but they can’t answer my questions. I’ve
I’d be so grateful if anyone with cns involvement can offer their experiences. I haven’t got a neurologist to ask advice from at the moment, I’m really hoping to see one early next year , hopefully, but I haven’t got an appointment yet. I have a great Gp, but they can’t answer my questions. I’ve
Galaxy2
in
Vasculitis UK
6 months ago
CARPEL TUNNEL
Hi, wonder if anyone has any tips on severe carpel tunnel pain during the night early morning. I wear splint at night but when 3 fingers on right hand go numb ( can’t bend them) pain starts right to elbow. I have put frozen peas from freezer on wrist /hand which initially makes pain worse but eventually
Hi, wonder if anyone has any tips on severe carpel tunnel pain during the night early morning. I wear splint at night but when 3 fingers on right hand go numb ( can’t bend them) pain starts right to elbow. I have put frozen peas from freezer on wrist /hand which initially makes pain worse but eventually
Haired
in
LUPUS UK
6 months ago
happened to see this article In a news feed regarding B and T cells, Covid and antibodies…
I have wondered why if we don’t make antibodies by getting vaccinated, then why bother. This article gives me some hope that we are protected more than I thought. Hope that this article is credible. Just wanted to post it for our information. Subject may have been touched on before in HealthUnlocked
I have wondered why if we don’t make antibodies by getting vaccinated, then why bother. This article gives me some hope that we are protected more than I thought. Hope that this article is credible. Just wanted to post it for our information. Subject may have been touched on before in HealthUnlocked
Curling123
in
CLL Support
6 months ago
Skin Rash
I have developed a skin rash all over my body for over a month now. I finished my second round of treatment; rituximab at the end of August 2023 and I have another year to take Venetoclax but my oncologist advised to stop Venetoclax for 3 weeks now. The rash is still going, does anyone have experience
I have developed a skin rash all over my body for over a month now. I finished my second round of treatment; rituximab at the end of August 2023 and I have another year to take Venetoclax but my oncologist advised to stop Venetoclax for 3 weeks now. The rash is still going, does anyone have experience
Champlain
in
CLL Support
6 months ago
Possible relapse, trouble seeing Rheumatologist.
Hi, I have not posted in quite some time. Read other's mostly, and since I have been in remission for 7-8 years I have not had much I could add to conversation. I was diagnosed with GPA in 2015. Put on pred and mycophenolate initially, then two rounds of rituximab. I have been med free since 2016
Hi, I have not posted in quite some time. Read other's mostly, and since I have been in remission for 7-8 years I have not had much I could add to conversation. I was diagnosed with GPA in 2015. Put on pred and mycophenolate initially, then two rounds of rituximab. I have been med free since 2016
lollypocket
in
Vasculitis UK
6 months ago
Abatacept
Good morning, I have been on Rituximab for a number of years , but having a really bad side effects now , saw Rhuemy a few weeks ago and she said that I might be switched to Abatacept . She also said about Tocilizumab but that has side effects of shingles aswell, so that’s a big NO How do you
Good morning, I have been on Rituximab for a number of years , but having a really bad side effects now , saw Rhuemy a few weeks ago and she said that I might be switched to Abatacept . She also said about Tocilizumab but that has side effects of shingles aswell, so that’s a big NO How do you
Jillyanne
in
NRAS
6 months ago
Disability Allowance - Any Advice Please
Hi everybody. At a recent trip to hospital for my usual check ups a question was posed by one of the medical staff. “Are you getting Disability Allowance”? No I answered! “Well you should have a look at that” they replied “especially if you have had to stop work” So that got me thinking. I am 62, I
Hi everybody. At a recent trip to hospital for my usual check ups a question was posed by one of the medical staff. “Are you getting Disability Allowance”? No I answered! “Well you should have a look at that” they replied “especially if you have had to stop work” So that got me thinking. I am 62, I
Investigator1
in
Vasculitis UK
6 months ago
Golimumab v. Rituximab? What is others' experience?
After being advised of liver and lung problems attributed to long term use of methotrexate (10mg weekly subcut), it has been suggested I move from a combination of Golimumab/methotrexate to Rituximab alone. From a layman's point of view, apart from a persistent cough) my RA was under perfect control
After being advised of liver and lung problems attributed to long term use of methotrexate (10mg weekly subcut), it has been suggested I move from a combination of Golimumab/methotrexate to Rituximab alone. From a layman's point of view, apart from a persistent cough) my RA was under perfect control
Lifesforliving
in
NRAS
6 months ago
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
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