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ITP, Need your help
In May 2016, some purpura and Petechia was observed in my legs, to know about it I did CBC. CBC report showed that Platelets of my blood had reached about 47,000 and by passage of 20 days it decreased and reached to 10,000. Beside this I had heavy bleeding and Epistaxis along with purpura. I stated
In May 2016, some purpura and Petechia was observed in my legs, to know about it I did CBC. CBC report showed that Platelets of my blood had reached about 47,000 and by passage of 20 days it decreased and reached to 10,000. Beside this I had heavy bleeding and Epistaxis along with purpura. I stated
Homayoon
in
ITP Support Association
9 months ago
The CLL Medicine Cabinet - Choosing the Right Treatment for You
The CLL Medicine Cabinet- Choosing the Right Treatment for You - https://cllsociety.org/cll-medicine-cabinet/ - There are several factors your healthcare provider will take into consideration when discussing what treatment options might be the best for you. These factors may include: Your
The CLL Medicine Cabinet- Choosing the Right Treatment for You - https://cllsociety.org/cll-medicine-cabinet/ - There are several factors your healthcare provider will take into consideration when discussing what treatment options might be the best for you. These factors may include: Your
lankisterguy
Volunteer
in
CLL Support
9 months ago
WHEN YOUR CLINICAL TRIAL FAILS, WHAT DO YOU DO NEXT ?
Except for a monthly neulasta injection, my Nurex 2127 trial had been going pretty well. My blood counts were good, 13ish HGB 1,80 ALC 150 Plat ANC was always low. My Dr. thought it would be idea to do an 18 month " lets see where we are BMB", no problem. I hadn't had one in about 20 months
Except for a monthly neulasta injection, my Nurex 2127 trial had been going pretty well. My blood counts were good, 13ish HGB 1,80 ALC 150 Plat ANC was always low. My Dr. thought it would be idea to do an 18 month " lets see where we are BMB", no problem. I hadn't had one in about 20 months
steve5441
in
CLL Support
9 months ago
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Nasal flu vaccine transmission
For anyone who has children, or close contact, and is on immunosuppressants, have you been around children who have had the live flu vaccine and been ok? They gave to my sister's son at school today (against her consent as she's on methotrexate for rheumatoid arthritis, so she wanted him to have the
For anyone who has children, or close contact, and is on immunosuppressants, have you been around children who have had the live flu vaccine and been ok? They gave to my sister's son at school today (against her consent as she's on methotrexate for rheumatoid arthritis, so she wanted him to have the
Grizzly-bear
in
Vasculitis UK
9 months ago
Abatacept and coming off prednisolone
Hello lovely helpful people I started Abatacept injections a month ago following a flare and stopping rituximab that didn’t really work. I was given a months worth of prednisolone which I have now stopped a few days ago, starting on 10mg and then 5mg. I was feeling really good and hoping that the Abatacept
Hello lovely helpful people I started Abatacept injections a month ago following a flare and stopping rituximab that didn’t really work. I was given a months worth of prednisolone which I have now stopped a few days ago, starting on 10mg and then 5mg. I was feeling really good and hoping that the Abatacept
debjw
in
NRAS
9 months ago
Shingrix vaccine - fitting it around rituximab infusions
Hi I understand the Shingrix vaccine is given as two doses, 2 to 6 months apart. I am under 60 and assuming I can persuade my GP of my eligibility, when should the vaccines be best scheduled around my 6 monthly rituximab infusions? Should the first one be 3-4 weeks or so before an infusion, the second
Hi I understand the Shingrix vaccine is given as two doses, 2 to 6 months apart. I am under 60 and assuming I can persuade my GP of my eligibility, when should the vaccines be best scheduled around my 6 monthly rituximab infusions? Should the first one be 3-4 weeks or so before an infusion, the second
Gurberly
in
Vasculitis UK
9 months ago
From RA to Lupus. High dose pred questions.
Hello everyone. My partner was diagnosed with inflammatory arthritis in 2015 and has been receiving treatment of various sorts for it ever since. The most long lasting of those treatments being Benapali (Etanercept) which he has been taking for 6 years. After a recent major flare and switching to
Hello everyone. My partner was diagnosed with inflammatory arthritis in 2015 and has been receiving treatment of various sorts for it ever since. The most long lasting of those treatments being Benapali (Etanercept) which he has been taking for 6 years. After a recent major flare and switching to
Chickenkeeper2015
in
LUPUS UK
9 months ago
Rituximab and Chest Infections
Not long after my first 2 Rituximab infusions I was diagnosed with a chest infection and given antibiotics. The GP booked me in for a chest X-ray and 3 or 4 weeks later that showed lingering infection so I had another week if antibiotics. At the weekend I felt very short of breath and my pulse was racing
Not long after my first 2 Rituximab infusions I was diagnosed with a chest infection and given antibiotics. The GP booked me in for a chest X-ray and 3 or 4 weeks later that showed lingering infection so I had another week if antibiotics. At the weekend I felt very short of breath and my pulse was racing
Grumpyoldmare
in
NRAS
9 months ago
Life After Rituximab - Is that it?
So that time has come when I am having my last Rituximab infusion on the 22nd November, it’s been 3 years on the treatment and my Consultant has told me that’s the max. My ANCA marker is low but what happens next? I have a Consultation with my Consultant on the 20th October and of course I will ask her
So that time has come when I am having my last Rituximab infusion on the 22nd November, it’s been 3 years on the treatment and my Consultant has told me that’s the max. My ANCA marker is low but what happens next? I have a Consultation with my Consultant on the 20th October and of course I will ask her
Investigator1
in
Vasculitis UK
9 months ago
STATIC dilemma
Hi I am coming up to year 6 on the Flair trial, on the ibrutinib and rituximab arm. Ibrutinib has worked very well for me with none of the major side effects, but many irritating minor side effects. I am moving to the Static trial where I will be off or on ibrutinib through choice or randomisation
Hi I am coming up to year 6 on the Flair trial, on the ibrutinib and rituximab arm. Ibrutinib has worked very well for me with none of the major side effects, but many irritating minor side effects. I am moving to the Static trial where I will be off or on ibrutinib through choice or randomisation
annmcgowan
in
CLL Support
9 months ago
Static trial dilemma
Hi I am about to complete the Flair Trial, having completed 6 years on the ibrutinib and rituximab arm in March 2024. I have decided to follow through with the Static trial where patients will be either off or on ibrutinib. The purpose of this trail is to see if giving patients a drug holiday prevents
Hi I am about to complete the Flair Trial, having completed 6 years on the ibrutinib and rituximab arm in March 2024. I have decided to follow through with the Static trial where patients will be either off or on ibrutinib. The purpose of this trail is to see if giving patients a drug holiday prevents
annmcgowan
in
CLL Support
9 months ago
RITUXIMAB
HI I HAVE PMR AND MY ANTIBODIES ARE THROUGH THE ROOF. IT HAS CAUSED MY KIDNEY READING TO DROP TO 11% FUNCTION. THE KIDNEY CONSULTANT HAS DECIDED THAT MY IMMUNE SYSTEM NEEDS TO BE LOWERED TO AVOID TOTAL KIDNEY FAILURE BECAUSE IT HAS CAUSED VASCULITIS AND I AM TO START RITUXIMAB NEXT WEEK. I HAVE HAD
HI I HAVE PMR AND MY ANTIBODIES ARE THROUGH THE ROOF. IT HAS CAUSED MY KIDNEY READING TO DROP TO 11% FUNCTION. THE KIDNEY CONSULTANT HAS DECIDED THAT MY IMMUNE SYSTEM NEEDS TO BE LOWERED TO AVOID TOTAL KIDNEY FAILURE BECAUSE IT HAS CAUSED VASCULITIS AND I AM TO START RITUXIMAB NEXT WEEK. I HAVE HAD
eyeBRing
in
PMRGCAuk
9 months ago
Ibrutinib failure
Hi folks,I’m lying here in hospital UK where I’ve been for the last 8 days,just looking for a few pointers.A couple of months ago my glands were out of control,the size of half a pear,as opposed to the little hazelnuts I’m used to seeing occasionally.They completely filled my neck,jawline..small ones
Hi folks,I’m lying here in hospital UK where I’ve been for the last 8 days,just looking for a few pointers.A couple of months ago my glands were out of control,the size of half a pear,as opposed to the little hazelnuts I’m used to seeing occasionally.They completely filled my neck,jawline..small ones
Nickos66
in
CLL Support
9 months ago
Rituximab adverse reaction to pre-meds
Hi I have Vasculitis GPA I have my fourth dose of rituximab coming up in a few weeks. I seem to have a reaction to the pre-meds they give prior to the rituximab infusion. One of the pre-med drugs I believe to be a steroid of some description. The history so far... Dose 1 - I was in hospital and
Hi I have Vasculitis GPA I have my fourth dose of rituximab coming up in a few weeks. I seem to have a reaction to the pre-meds they give prior to the rituximab infusion. One of the pre-med drugs I believe to be a steroid of some description. The history so far... Dose 1 - I was in hospital and
Gurberly
in
Vasculitis UK
9 months ago
Rituximab doses
Hi All Hope everyone is ok. This a question for anyone on rituximab, I’m really interested in the dose you receive . I’ve been having rituximab for years, sometimes over 4 weeks a time sometimes at 2. I don’t react very well on the day so have to have the infusions very slowly . I’ve also have had
Hi All Hope everyone is ok. This a question for anyone on rituximab, I’m really interested in the dose you receive . I’ve been having rituximab for years, sometimes over 4 weeks a time sometimes at 2. I don’t react very well on the day so have to have the infusions very slowly . I’ve also have had
Galaxy2
in
Vasculitis UK
9 months ago
Covid vaccination brand
I was diagnosed with ANCA+ Vasculitis 15 years ago. Currently treated with rixathon every 7 -12 months. I used to be treated with rituximab but that affected my memory. My concern is the Pfizer Covid vaccination because it gives me a leg rash - Livedo reticularis, which worsens each time and never
I was diagnosed with ANCA+ Vasculitis 15 years ago. Currently treated with rixathon every 7 -12 months. I used to be treated with rituximab but that affected my memory. My concern is the Pfizer Covid vaccination because it gives me a leg rash - Livedo reticularis, which worsens each time and never
Rosie7may
in
Vasculitis UK
10 months ago
Rituximab- my experience.
Rituximab is the mainstay of my treatment for Waldenstroms.1st treatment was Rutuximab on its own; 1 infusion per week for 4:weeks. I had mild headache during the first infusion but otherwise no adverse effects. Can take up to around 5 hours. I'll pass on the prepping because I think its variable from
Rituximab is the mainstay of my treatment for Waldenstroms.1st treatment was Rutuximab on its own; 1 infusion per week for 4:weeks. I had mild headache during the first infusion but otherwise no adverse effects. Can take up to around 5 hours. I'll pass on the prepping because I think its variable from
Hidden
in
CLL Support
10 months ago
Update.
Had my last infusion of Rituximab today. A doctor came to speak with me, apparently my cll is not responding to the infusions. They are hoping that this last dose will trigger a reaction but she is doubtful. She asked if I had ever taken acalabrutinib to which I said no and I think i have heard that
Had my last infusion of Rituximab today. A doctor came to speak with me, apparently my cll is not responding to the infusions. They are hoping that this last dose will trigger a reaction but she is doubtful. She asked if I had ever taken acalabrutinib to which I said no and I think i have heard that
Jacksc06
in
CLL Support
10 months ago
Rituximab failure ?
Hi Folks, my consultant confirmed yesterday that Rituximab has done very little for me, CRP has come down a bit to 38 from over 100 but every day I still struggle to get about. Starting to get properly depressed about it all to be honest. What can they do next ? I had my hopes up that I might at least
Hi Folks, my consultant confirmed yesterday that Rituximab has done very little for me, CRP has come down a bit to 38 from over 100 but every day I still struggle to get about. Starting to get properly depressed about it all to be honest. What can they do next ? I had my hopes up that I might at least
RootsToots
in
NRAS
10 months ago
Reaction to Rituximab Infusion
I have Cold Agglutinin Anemia due to indolent CLL. I have been on W&W. My doctor wants to start Rituximab infusion since my hemoglobin had gone down to 8.2 on my last visit. What has been the reactions & results to any one having Rituximab infusions?
I have Cold Agglutinin Anemia due to indolent CLL. I have been on W&W. My doctor wants to start Rituximab infusion since my hemoglobin had gone down to 8.2 on my last visit. What has been the reactions & results to any one having Rituximab infusions?
emg112253
in
CLL Support
10 months ago
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