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White cell yo-yo
I had to come off plaquenil 2 1/2 weeks ago as my white cell count and neurophils were severely low . They went up and now they have gone down again , the rheumy nurse checked back and they have been doing that from august , they went up quite high at one point but have plummeted again . The rheumy nurse
I had to come off plaquenil 2 1/2 weeks ago as my white cell count and neurophils were severely low . They went up and now they have gone down again , the rheumy nurse checked back and they have been doing that from august , they went up quite high at one point but have plummeted again . The rheumy nurse
weathervane
in
NRAS
7 years ago
Just diagnosed
I don't what to think. The doctor said my FISH test is negative; no chromosomal damage. He is proposing FCR early treatment to the hospital tumor board based on my age of 55. I may lose my job and insurance soon. So if FCR is an option, I hope I can get it asap.
I don't what to think. The doctor said my FISH test is negative; no chromosomal damage. He is proposing FCR early treatment to the hospital tumor board based on my age of 55. I may lose my job and insurance soon. So if FCR is an option, I hope I can get it asap.
TXteacher
in
CLL Support
7 years ago
Three weeks and bruising...
Bev is still improving after three weeks in hospital now. The Rituximab needle/drip from last week (see last week’s post) still seems to be helping but it’s a slow struggle back - as you can see in the video posted below. The blisters and ulcers in her mouth are still improving and things seem to be
Bev is still improving after three weeks in hospital now. The Rituximab needle/drip from last week (see last week’s post) still seems to be helping but it’s a slow struggle back - as you can see in the video posted below. The blisters and ulcers in her mouth are still improving and things seem to be
Beverly
Administrator
in
The Australian Sjögren's Syndrome Association
7 years ago
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Autoimmune meningitis
Hi! I'm new to this place but not to meningitis IRL. :P I've had it for years to and fro, a year ago I got to know that it's due to Sjogrens and after avaiting full effect of rituximab treatment (and plaquenil, prednisolone, IvIg and medication for Hashimoto's) they now think my symptoms are due to permanent
Hi! I'm new to this place but not to meningitis IRL. :P I've had it for years to and fro, a year ago I got to know that it's due to Sjogrens and after avaiting full effect of rituximab treatment (and plaquenil, prednisolone, IvIg and medication for Hashimoto's) they now think my symptoms are due to permanent
Taiga
in
Meningitis Now
7 years ago
Hypothyroidism, Bullous Pemphigoid, Osteoarthritis, Rheumatoid Arthritis, Vasculitis, High Blood Pressure, Glaucoma. Bowel problems.
Presently taking Mycophenolate but not sure if it's doing anything for my RA. I was put on it in the hope of suffering less from infections, which I appear to pick up all the time, so not sure it has made any difference. Previously taken steroids and Azathioprine then Methotrexate. That was eventually
Presently taking Mycophenolate but not sure if it's doing anything for my RA. I was put on it in the hope of suffering less from infections, which I appear to pick up all the time, so not sure it has made any difference. Previously taken steroids and Azathioprine then Methotrexate. That was eventually
Jetxav
in
NRAS
7 years ago
Visited Bev again...
A week ago she had been in hospital for a week already with the kidney failure and Lupus Nephritis diagnosis. For the first week Bev was taking so many pills each day – 28! - that her mouth and gums went blue and she developed ulcers in her mouth and blisters under her tongue. They had requested the
A week ago she had been in hospital for a week already with the kidney failure and Lupus Nephritis diagnosis. For the first week Bev was taking so many pills each day – 28! - that her mouth and gums went blue and she developed ulcers in her mouth and blisters under her tongue. They had requested the
Beverly
Administrator
in
The Australian Sjögren's Syndrome Association
7 years ago
Venetoclax CLL 11q, Trisomy 12, MDS
Good day to everyone. I observed for a couple of weeks and felt the love. So I decided to post and share my story. Husband was Diagnosed with CLL with MDS in 2008. ( he’s now 50 ) WW until August 2011 FCR August 2011 -January 2012 - reached good #’s and he felt great until March 2015 when CLL came
Good day to everyone. I observed for a couple of weeks and felt the love. So I decided to post and share my story. Husband was Diagnosed with CLL with MDS in 2008. ( he’s now 50 ) WW until August 2011 FCR August 2011 -January 2012 - reached good #’s and he felt great until March 2015 when CLL came
Midgey_
in
CLL Support
7 years ago
My journey on FLAIR (Ibrutinib & Rituximab)
My journey (so far…) I am a 65 year old man living in the UK and currently on the FLAIR trial (Rituximab / Ibrutinib). Two years ago, my then partner, who was a homeopath suggested that I had my lymph nodes checked as they had been swollen for some time. I thank her for that. After numerous procedures
My journey (so far…) I am a 65 year old man living in the UK and currently on the FLAIR trial (Rituximab / Ibrutinib). Two years ago, my then partner, who was a homeopath suggested that I had my lymph nodes checked as they had been swollen for some time. I thank her for that. After numerous procedures
Naboo
in
CLL Support
7 years ago
HIB vaccine
Has anyone had to have a Hibb vaccine? I have had numerous haemafilus influenza infections since having rituximab. In fact I can’t get rid of it at the moment and on 6 weeks of antibiotics. The hospital tested my antiobodies against hibb and they are low so I have to have a vaccine. I’m really hoping
Has anyone had to have a Hibb vaccine? I have had numerous haemafilus influenza infections since having rituximab. In fact I can’t get rid of it at the moment and on 6 weeks of antibiotics. The hospital tested my antiobodies against hibb and they are low so I have to have a vaccine. I’m really hoping
joannebond360
in
LUPUS UK
7 years ago
Have Relapsed From FCR and looking for best choice for Round Two
Was diagnosed cll 6 yrs ago. At age 49 first time Id ever been to doctor in my life. Living in Canada. Never went back to Doctor for 4 yrs didn't want to take any non natural treatments. Finally heart pounding in ears so loud couldn't watch Tv without sound cranked up. Spleen so large I looked 8 months
Was diagnosed cll 6 yrs ago. At age 49 first time Id ever been to doctor in my life. Living in Canada. Never went back to Doctor for 4 yrs didn't want to take any non natural treatments. Finally heart pounding in ears so loud couldn't watch Tv without sound cranked up. Spleen so large I looked 8 months
CLLCOLIN
in
CLL Support
7 years ago
Interesting Study
Funded research study looking at the effect of Rituximab on flu vaccinations in patients with ANCA associated Vasculitis. Specifically whether Rituximab makes the vaccine less effective and what to do to mitigate the risk. http://www.arthritisresearchuk.org/research/grant-tracker-items/2017/vaccine-responses-in-anca-associated-vasculitis-aav.aspx
Funded research study looking at the effect of Rituximab on flu vaccinations in patients with ANCA associated Vasculitis. Specifically whether Rituximab makes the vaccine less effective and what to do to mitigate the risk. http://www.arthritisresearchuk.org/research/grant-tracker-items/2017/vaccine-responses-in-anca-associated-vasculitis-aav.aspx
Hidden
in
Vasculitis UK
7 years ago
The British Society for Rheumatology guideline for the management of systemic lupus erythematosus in adults
The British Society for Rheumatology guideline for the management of systemic lupus erythematosus in adults:
Executive Summary
Caroline Gordon Maame-Boatemaa Amissah-Arthur Mary Gayed Sue Brown Ian N. Bruce David D’Cruz Benjamin Empson Bridget Griffiths David Jayne Munther Khamashta
The British Society for Rheumatology guideline for the management of systemic lupus erythematosus in adults:
Executive Summary
Caroline Gordon Maame-Boatemaa Amissah-Arthur Mary Gayed Sue Brown Ian N. Bruce David D’Cruz Benjamin Empson Bridget Griffiths David Jayne Munther Khamashta
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
7 years ago
RITUXIMAB
Hi there eveyone I am starting on Rituximab next week with my first infusion and I am a little nervous to say the least! Just wanting to know if anyone who is on it as any info on side effects etc. As we all know some Consultants/Specialist Nurses seem to gloss over the bad bits and only tell you
Hi there eveyone I am starting on Rituximab next week with my first infusion and I am a little nervous to say the least! Just wanting to know if anyone who is on it as any info on side effects etc. As we all know some Consultants/Specialist Nurses seem to gloss over the bad bits and only tell you
Bakbre
in
LUPUS UK
7 years ago
Should men and women be treated differently?
In CLL muated/unmutated is beginning to matter in treatment choice.. but what about the other large component ...sex?? Surely in the fledgling era of personalised medicine this should be looked at? A recent study look at this in DLBCL, think Richter's, and the use of rituxan a component in RCHOP, indicates
In CLL muated/unmutated is beginning to matter in treatment choice.. but what about the other large component ...sex?? Surely in the fledgling era of personalised medicine this should be looked at? A recent study look at this in DLBCL, think Richter's, and the use of rituxan a component in RCHOP, indicates
Cllcanada
Top Poster CURE Hero
in
CLL Support
7 years ago
Rituximab and pancreas
Good Morning All, Has anybody had problems with Rituximab affecting their pancreas? I've been 'ill' with various things over the last few weeks, and after a blood test last week I appear to have a problem with my pancreas and am in the middle of a flare.
Good Morning All, Has anybody had problems with Rituximab affecting their pancreas? I've been 'ill' with various things over the last few weeks, and after a blood test last week I appear to have a problem with my pancreas and am in the middle of a flare.
KayEP
in
NRAS
7 years ago
Just finished FIRST round FCR - what will happen next?
I just finished three days of FCR infusion. They waited for the third day to infuse the Rituximab, but I had Cyclophosphamide and Fludarabine all three days. I had only one tiny issue with a scratchy throat and itchy tongue with the Rituximad which they knocked back quickly with Benadryl. My Question
I just finished three days of FCR infusion. They waited for the third day to infuse the Rituximab, but I had Cyclophosphamide and Fludarabine all three days. I had only one tiny issue with a scratchy throat and itchy tongue with the Rituximad which they knocked back quickly with Benadryl. My Question
Marie-54
in
CLL Support
7 years ago
Definitive diagnosis
Hi all, just a quick update. Had our third visit to the Haematologist today as a follow up to Allan's CT scan three weeks ago. The doctor was able to confirm that it is low grade marginal zone Splenic NHL and the good news is that the blood work showed no change from a month ago and the CT scan showed
Hi all, just a quick update. Had our third visit to the Haematologist today as a follow up to Allan's CT scan three weeks ago. The doctor was able to confirm that it is low grade marginal zone Splenic NHL and the good news is that the blood work showed no change from a month ago and the CT scan showed
Maryandallan
in
Non Hodgkin's Lymphoma Friends
7 years ago
Lupus nephritis
HI there My son aged 18 was diagnosed 2 weeks ago with SLE and lupus nephritis and pneumonitis. He was classed at a 4 for his kidneys and has been started on IV rituximab, had 3 pulses of IV methylpred and is on oral pred, mycopehalate, Adcal and ranitidine. His BP is roughly 90/45 average at the moment
HI there My son aged 18 was diagnosed 2 weeks ago with SLE and lupus nephritis and pneumonitis. He was classed at a 4 for his kidneys and has been started on IV rituximab, had 3 pulses of IV methylpred and is on oral pred, mycopehalate, Adcal and ranitidine. His BP is roughly 90/45 average at the moment
Deegraham
in
LUPUS UK
7 years ago
Enlarged spleen
Quick update since my last post about spleen pain. I went for an ultrasound and my spleen size and weight has basically doubled. They've taken more bloods for profiling and prognosis, also getting a CT scan done on the 22nd. It's looking more likely I'll be getting treatment pretty soon, probably FCR
Quick update since my last post about spleen pain. I went for an ultrasound and my spleen size and weight has basically doubled. They've taken more bloods for profiling and prognosis, also getting a CT scan done on the 22nd. It's looking more likely I'll be getting treatment pretty soon, probably FCR
Daveyo
in
CLL Support
7 years ago
Abdominal pain
Hi folks, I'm David, I'm 52 and live near Glasgow. I was diagnosed with CLL almost 8 years ago. I've been on watch and wait for most of that time, apart from a course of Rituximab about 3 years ago as my platelets had gone thru the floor and my WBC had more than doubled in the space of 6 months. Recently
Hi folks, I'm David, I'm 52 and live near Glasgow. I was diagnosed with CLL almost 8 years ago. I've been on watch and wait for most of that time, apart from a course of Rituximab about 3 years ago as my platelets had gone thru the floor and my WBC had more than doubled in the space of 6 months. Recently
Daveyo
in
CLL Support
7 years ago
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