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Living with rheumatoid
Hello I am new member. I have had RH for 3 years, and I am getting worse. I attended the hospital every 6 months, I have been on 13 different medications and nothing has worked tablets and injections. So just now I am on rituximab, this is done by infusion you go to the day unit, I have had one round
Hello I am new member. I have had RH for 3 years, and I am getting worse. I attended the hospital every 6 months, I have been on 13 different medications and nothing has worked tablets and injections. So just now I am on rituximab, this is done by infusion you go to the day unit, I have had one round
auldreekie2
in
NRAS
5 years ago
Retuximab protocol
Hello everyone Rituximab is considered 1st line treatment for membranous nephropathy. It would be the ideal drug , if you still have active disease. It works to decrease the antibody that we think causes membranous nephropathy. 9 years ago it was a very expensive treatment ( drug). Now it is affordable
Hello everyone Rituximab is considered 1st line treatment for membranous nephropathy. It would be the ideal drug , if you still have active disease. It works to decrease the antibody that we think causes membranous nephropathy. 9 years ago it was a very expensive treatment ( drug). Now it is affordable
htpi1543
in
Kidney Disease
5 years ago
Truxima infusions/Rituximab
Following some other posts I have seen, has anyone had Truxima infusions and done well? I seem to have trodden a similar path to some of you other good folk, ie done quite well with Enbrel for a few years, then swapped to Benepali which finished me off so Enbrel never worked again. 2.5 years down the
Following some other posts I have seen, has anyone had Truxima infusions and done well? I seem to have trodden a similar path to some of you other good folk, ie done quite well with Enbrel for a few years, then swapped to Benepali which finished me off so Enbrel never worked again. 2.5 years down the
optimist53
in
Arthritis Action
5 years ago
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Fludarabine: rare side effect of destroying ability for red blood cell production in myself. But also unwell with fevers.
I've had a really difficult result from my bone marrow biopsy today. Four months ago I posted the effect of human Parvovirus on myself - in an immune-compromised person this virus can have the effect of inhibiting production of blood cells in bone marrow. Regular packed red cell transfusions have
I've had a really difficult result from my bone marrow biopsy today. Four months ago I posted the effect of human Parvovirus on myself - in an immune-compromised person this virus can have the effect of inhibiting production of blood cells in bone marrow. Regular packed red cell transfusions have
Jotame
in
CLL Support
5 years ago
Running out of treatments
I failed on Rituximab this year after 11 years ( 16 cycles). The team decided to try me on Tocilizumab (TCZ) seeing as its also a b cell depleter. It took them 14 weeks to get organised by then I was in a state so had a depo the day I started the TCZ. After 12 weeks I had flared again so had another
I failed on Rituximab this year after 11 years ( 16 cycles). The team decided to try me on Tocilizumab (TCZ) seeing as its also a b cell depleter. It took them 14 weeks to get organised by then I was in a state so had a depo the day I started the TCZ. After 12 weeks I had flared again so had another
Hidden
in
NRAS
5 years ago
Acute ankle pain
Hi, I wonder if anyone else has experienced sudden onset of acute joint pain. I am a year post FCR chemo for CLL. Suddenly started with acute ankle pain bilaterally in my ankles and feet. After 3 weeks of anti inflammatory medication and pain killers, the symptoms remain the same. Struggle to walk even
Hi, I wonder if anyone else has experienced sudden onset of acute joint pain. I am a year post FCR chemo for CLL. Suddenly started with acute ankle pain bilaterally in my ankles and feet. After 3 weeks of anti inflammatory medication and pain killers, the symptoms remain the same. Struggle to walk even
Kingfisher20
in
CLL Support
5 years ago
second round of rituximab infusions
Hi All Hope everyone is well today its been a while since my last post due to other things going on such as a stay in hospital due to portal hypertension and it appears i now have varices veins as a result, Anyway cant wait for weekend to recieve next infusions since the last ones last July/August its
Hi All Hope everyone is well today its been a while since my last post due to other things going on such as a stay in hospital due to portal hypertension and it appears i now have varices veins as a result, Anyway cant wait for weekend to recieve next infusions since the last ones last July/August its
phil_54
in
NRAS
5 years ago
CLL remission
My spouse is in remission after doing 6 rounds of FCR for his CLL. His last round was in August. Since late September he has been getting small lumps under his skin . They seem to only affect his face neck and chest. They are somewhat red and inflamed. They go away within a couple days on their own
My spouse is in remission after doing 6 rounds of FCR for his CLL. His last round was in August. Since late September he has been getting small lumps under his skin . They seem to only affect his face neck and chest. They are somewhat red and inflamed. They go away within a couple days on their own
DDInc65
in
CLL Support
5 years ago
Are you due to receive a biologic therapy in the next two weeks? Would you be happy to appear on TV?
Hi everyone, We've been contacted by a producer who is working on a Channel 4 programme for the documentary series, Dispatches. The programme is investigating how a potential US-UK trade deal could affect the availability of biologic treatments on the NHS. As part of the show, they would like to feature
Hi everyone, We've been contacted by a producer who is working on a Channel 4 programme for the documentary series, Dispatches. The programme is investigating how a potential US-UK trade deal could affect the availability of biologic treatments on the NHS. As part of the show, they would like to feature
Paul_Howard
LUPUS UK
in
LUPUS UK
5 years ago
Treating Itp with Herbal Supplements
Hi! I'm a newbie here! I came aboard to find a natural way to treat Itp. Since Prednisone isn't cutting it. Dexamethasone and Eltrombopag also didn't take. The Doctor's want to try rituximab next and I'm a little bit leary of that one. Then of course, if that doesn't work, they'll want to take my spleen
Hi! I'm a newbie here! I came aboard to find a natural way to treat Itp. Since Prednisone isn't cutting it. Dexamethasone and Eltrombopag also didn't take. The Doctor's want to try rituximab next and I'm a little bit leary of that one. Then of course, if that doesn't work, they'll want to take my spleen
Pixiellama
in
NRAS
5 years ago
Peripheral Neuropathy and MGUS
Hi, new here. I have peripheral neuropathy caused by an autoimmune disorder- IgM MG with MAG antibody. I was eventually diagnosed with Monoclonal gammopathy (MG) about 4 years ago after a year of complaining of unusual tiredness, balance problems, joint pain and several skin and gum infections. MG,
Hi, new here. I have peripheral neuropathy caused by an autoimmune disorder- IgM MG with MAG antibody. I was eventually diagnosed with Monoclonal gammopathy (MG) about 4 years ago after a year of complaining of unusual tiredness, balance problems, joint pain and several skin and gum infections. MG,
misswoosie
in
Foggy's "Invisible Illness" Support
5 years ago
A Conversation with Dr Tam about Zanubrutinib: A Novel BTK Inhibitor
How does zanubrutinib differ from ibrutinib in pharmacokinetics and target occupancy? Zanubrutinib has a more-specific target binding profile than ibrutinib. It binds to BTK at least as potently as ibrutinib. Zanubrutinib has fewer off-target effects on related enzymes, including the epidermal growth
How does zanubrutinib differ from ibrutinib in pharmacokinetics and target occupancy? Zanubrutinib has a more-specific target binding profile than ibrutinib. It binds to BTK at least as potently as ibrutinib. Zanubrutinib has fewer off-target effects on related enzymes, including the epidermal growth
Jm954
Administrator
in
CLL Support
5 years ago
Needing a miracle now!
Looking like my SLE is under control and going into remission for a 2nd time, no water tablets for 3.5 weeks all looking well and now I'm back on them at 2 per day sometimes 3 to control the water oedema. Kidney function is in decline still but just had another dose of Rituximab to help fight the lupus
Looking like my SLE is under control and going into remission for a 2nd time, no water tablets for 3.5 weeks all looking well and now I'm back on them at 2 per day sometimes 3 to control the water oedema. Kidney function is in decline still but just had another dose of Rituximab to help fight the lupus
Hidden
in
LUPUS UK
5 years ago
Oncoplex Cancer Gene Panel test
I just got the results of 2 new tests back. One is called an Oncoplex Cancer Gene Panel and the results said : “The sample tested is positive for copy loss of portions of chromosome 5 (includes CD74 and RPS14) and a low level variant in ASLX1 “ I trie to look this up, but was confused by the article
I just got the results of 2 new tests back. One is called an Oncoplex Cancer Gene Panel and the results said : “The sample tested is positive for copy loss of portions of chromosome 5 (includes CD74 and RPS14) and a low level variant in ASLX1 “ I trie to look this up, but was confused by the article
t2aa
in
CLL Support
5 years ago
Ibrutinib and pneumonia
On ibrutinib for 2-1/2 yrs with good response managing CLL. Depleted immune status continues after FCR 6 yrs ago. Had pneumonia for 10 mos and continue to have debilitating episodes of extreme fatigue, chills and sweats that are only addressed with heavy duty moxyfloxacin. Welcome any thoughts
On ibrutinib for 2-1/2 yrs with good response managing CLL. Depleted immune status continues after FCR 6 yrs ago. Had pneumonia for 10 mos and continue to have debilitating episodes of extreme fatigue, chills and sweats that are only addressed with heavy duty moxyfloxacin. Welcome any thoughts
irish828
in
CLL Support
5 years ago
Flu jab after Rituximab
Hi all. Just had my rituximab in August now I realise ive compromised my flu jab!🤦♀️ Anyone else not had the flu jab? I've always had mine Thanks
Hi all. Just had my rituximab in August now I realise ive compromised my flu jab!🤦♀️ Anyone else not had the flu jab? I've always had mine Thanks
Marie41
in
NRAS
5 years ago
New Review Article about Venetoclax
There is no doubt to me that Venetoclax is a very exciting development for us in CLL. And yet we don't seem to talk about it quite as much on here as Ibrutinib and FCR. Just this month a very helpful and quite detailed review article has been released. It is well worth a look whether you are in watch
There is no doubt to me that Venetoclax is a very exciting development for us in CLL. And yet we don't seem to talk about it quite as much on here as Ibrutinib and FCR. Just this month a very helpful and quite detailed review article has been released. It is well worth a look whether you are in watch
AdrianUK
in
CLL Support
5 years ago
First Rituximab Infusion
Hi all I am waiting on blood tests to come back to see if I can have Rituximab instead of Azathioprine for my gpa my blood numbers are creeping up my consultant thinks it will be better for me he has given me a booklet and I have read lots of info from web just looking for some info from others when
Hi all I am waiting on blood tests to come back to see if I can have Rituximab instead of Azathioprine for my gpa my blood numbers are creeping up my consultant thinks it will be better for me he has given me a booklet and I have read lots of info from web just looking for some info from others when
russellk3
in
Vasculitis UK
5 years ago
Rituximab
Is there anyone on rituximab with osteoartritis as well as R.A.
Is there anyone on rituximab with osteoartritis as well as R.A.
LUPIELASSY13
in
LUPUS UK
5 years ago
Farewell
My wife of nearly 50 years died in late April after a 11 year battle with CLL. Diagnosed in 2008 with NHL (SLL) her haematologist treated her with 6 cycles of CHOP +R (cyclophosphamide, doxorubicin, vincristine, prednisone + rituximab). This was followed by 9 quarterly treatments of rituximab. In 2013
My wife of nearly 50 years died in late April after a 11 year battle with CLL. Diagnosed in 2008 with NHL (SLL) her haematologist treated her with 6 cycles of CHOP +R (cyclophosphamide, doxorubicin, vincristine, prednisone + rituximab). This was followed by 9 quarterly treatments of rituximab. In 2013
HannahHugo
in
CLL Support
5 years ago
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