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IVIG CURE?
HI EVERYONE!!! I know this is a difficult time for folks and I pray for my CLL friends, I wanted you to know. My question after a brief explanation. My user name is Kimsome. I was diagnosed with lymphoma SLL/CLL in 2010 when I was 45 year old female. I had aggressive chemo with a mix of Fludara, Cytoxin
HI EVERYONE!!! I know this is a difficult time for folks and I pray for my CLL friends, I wanted you to know. My question after a brief explanation. My user name is Kimsome. I was diagnosed with lymphoma SLL/CLL in 2010 when I was 45 year old female. I had aggressive chemo with a mix of Fludara, Cytoxin
Kimsome
in
CLL Support
4 years ago
Bloods and medication ordered by Oral Medicine Consultant ...refused by GP.
Has anyone experienced this at all? Refusal to prescribe and do bloods? I have been waiting to see an oral medicine consultant since January. Obviously, due to the dreaded, it was, like many appointments, cancelled and put on hold. Thankfully, I have not had to wait too long since easing of lockdown
Has anyone experienced this at all? Refusal to prescribe and do bloods? I have been waiting to see an oral medicine consultant since January. Obviously, due to the dreaded, it was, like many appointments, cancelled and put on hold. Thankfully, I have not had to wait too long since easing of lockdown
Minnskimoo
in
LUPUS UK
4 years ago
IVIg Infusion feedback
Hi everyone, I am thinking this is probably going to seem like a mild problem, and I tend to be very overly anxious about anything new, but my Immuneglobulin g is down to 245. I have had no infections, been on Imbruveca for 2.5 years and my numbers are all really very good and I feel great. My Oncologist
Hi everyone, I am thinking this is probably going to seem like a mild problem, and I tend to be very overly anxious about anything new, but my Immuneglobulin g is down to 245. I have had no infections, been on Imbruveca for 2.5 years and my numbers are all really very good and I feel great. My Oncologist
Cgolen99
in
CLL Support
4 years ago
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Test results
My blood work was ok except for the
Immunoglobulin
A and Ferritin were both high. So on my brain MRI, it looks like it is ok with a notation that I have “rare scattered punctate subcortical T2W hypertensities of the frontal lobes bilaterally seems. No demyelination plaque isn’t noted.”
My blood work was ok except for the
Immunoglobulin
A and Ferritin were both high. So on my brain MRI, it looks like it is ok with a notation that I have “rare scattered punctate subcortical T2W hypertensities of the frontal lobes bilaterally seems. No demyelination plaque isn’t noted.”
Tulip77
in
My MSAA Community
4 years ago
Immunoglobulin replacement therapy
The treatments for my GPA have now beaten my
immunoglobulin
levels down so low that the Vasculitis clinic at Addenbrookes referred me to the Immunology clinic.
The treatments for my GPA have now beaten my
immunoglobulin
levels down so low that the Vasculitis clinic at Addenbrookes referred me to the Immunology clinic.
nicholson27
in
Vasculitis UK
4 years ago
IVIG Infusion - Patients with no masks
I attended the chemo ward today for my IVIG infusion, the first in 5 months. I suspended this 5 months ago in line with the CLLForum's Recommendations of reducing the risk of CLL patients contracting COVID. Because it had been 5 months since my last infusion, I had to go through the ramp up procedure
I attended the chemo ward today for my IVIG infusion, the first in 5 months. I suspended this 5 months ago in line with the CLLForum's Recommendations of reducing the risk of CLL patients contracting COVID. Because it had been 5 months since my last infusion, I had to go through the ramp up procedure
RobertCLL
in
CLL Support
4 years ago
lymph nodes and ear ache
Hello everyone. I haven't posted in a while But I need the wisdom of your experience. Here's my question: have you had ear aches caused by swollen lymph nodes without having an infection? Here's my story: I'm still in a clinical trial and pretty closely monitored. My immunoglobulins are low and falling
Hello everyone. I haven't posted in a while But I need the wisdom of your experience. Here's my question: have you had ear aches caused by swollen lymph nodes without having an infection? Here's my story: I'm still in a clinical trial and pretty closely monitored. My immunoglobulins are low and falling
DMary
in
CLL Support
4 years ago
CLL for 6 years, 80 years old!
My husband has CLL, AND HAS HAD THREE issues with fluid in his lungs, and the last one was very serious , with infection! So they stopped Imbruvica, and have him once a month doing infusions of IVIG. VERY EXPENSIVE, even with insurance , monthly it is 549 per month. We can’t afford this indefinitely!
My husband has CLL, AND HAS HAD THREE issues with fluid in his lungs, and the last one was very serious , with infection! So they stopped Imbruvica, and have him once a month doing infusions of IVIG. VERY EXPENSIVE, even with insurance , monthly it is 549 per month. We can’t afford this indefinitely!
Dummer70
in
CLL Support
4 years ago
T3 alone for 3 weeks
FT4 -7.3, range 4.5-12.0 ug/dL FT3 -170 range 71-180 ng/dL Thyroglobulin Antibody <1.0 IU/mL 0.0-O.9
Immunoglobulin
G, Qn 1054 mg/dL 603-1613 mg/dL Anyway, I feel as if these headaches are also never-ending because they never
FT4 -7.3, range 4.5-12.0 ug/dL FT3 -170 range 71-180 ng/dL Thyroglobulin Antibody <1.0 IU/mL 0.0-O.9
Immunoglobulin
G, Qn 1054 mg/dL 603-1613 mg/dL Anyway, I feel as if these headaches are also never-ending because they never
GKeith
in
Positive Wellbeing During Self-Isolation
4 years ago
Blood results... Any ideas?
The abnormal results were a low
immunoglobulin
M and a high creatinine. My estimated GFR is 67. I know the latter two can be kidney related but not much else (Googling is just making me feel very confused!). Thanks!! 😊
The abnormal results were a low
immunoglobulin
M and a high creatinine. My estimated GFR is 67. I know the latter two can be kidney related but not much else (Googling is just making me feel very confused!). Thanks!! 😊
BookishVibes
in
LUPUS UK
4 years ago
VenR in Relapsed CLL: 4-Year Results and Evaluation of Impact of Genomic Complexity and Gene Mutations from MURANO 3 study
[/i] [i]'Clinically relevant biomarkers predictive of poor response to CIT include unmutated
immunoglobulin
heavy chain (IGHV) gene, del(17p), mutated TP53, and cytogenetic or genomic complexity (GC).8-11 Targeted therapies overcome the adverse impact of IGHV status, but the identification of biomarkers
[/i] [i]'Clinically relevant biomarkers predictive of poor response to CIT include unmutated
immunoglobulin
heavy chain (IGHV) gene, del(17p), mutated TP53, and cytogenetic or genomic complexity (GC).8-11 Targeted therapies overcome the adverse impact of IGHV status, but the identification of biomarkers
Jm954
Administrator
in
CLL Support
4 years ago
First thyroid results (and others are in)
Bilirubin - 24 Albumin - 53 Coeliac
Immunoglobulin
IgA - 5.32 I'd be interested in anyone with long-term experience of this what your thoughts are. This is the culmination of many months of symptoms, the worst of which are the severe tiredness and brain fog.
Bilirubin - 24 Albumin - 53 Coeliac
Immunoglobulin
IgA - 5.32 I'd be interested in anyone with long-term experience of this what your thoughts are. This is the culmination of many months of symptoms, the worst of which are the severe tiredness and brain fog.
Hidden
in
Thyroid UK
4 years ago
The FIRST Immunoglobulin A vasculitis (Henoch Schonlein Purpura) Online Patient Information Event - for patients and carers
https://www.vasculitis.org.uk/news/online-hsp-patient-information-event Patient Information Event An online event for all patients with HSP and their parents/carers – an opportunity to learn more, access support and enjoy a little magic…
https://www.vasculitis.org.uk/news/online-hsp-patient-information-event Patient Information Event An online event for all patients with HSP and their parents/carers – an opportunity to learn more, access support and enjoy a little magic…
Suzym2u
Vasculitis UK
in
Vasculitis UK
4 years ago
Reply to Donna re Peripheral Neuropathy
Paraproteins are found if these specific
immunoglobulin
tests are done . Check you have had this blood test- electrophoresis. Just thought you may find this interesting ? I have had more blood tests and awaiting scan to confirm diagnosis.
Paraproteins are found if these specific
immunoglobulin
tests are done . Check you have had this blood test- electrophoresis. Just thought you may find this interesting ? I have had more blood tests and awaiting scan to confirm diagnosis.
JW2shoes
in
Neuropathy Support
4 years ago
Gazyva and Low Platelet Count?
Hi all. I completed the first 1000mg of Gazyva last week and am scheduled for round two in a couple days. I don’t have the actual numbers, but white blood cell, red blood dell and lymphocyte counts are all “looking good”. My oncologist said the drop in platelet count was unexpected. He immediately
Hi all. I completed the first 1000mg of Gazyva last week and am scheduled for round two in a couple days. I don’t have the actual numbers, but white blood cell, red blood dell and lymphocyte counts are all “looking good”. My oncologist said the drop in platelet count was unexpected. He immediately
msccsm11
in
CLL Support
4 years ago
Report from CLL Webinar: Prof Hillmen, 10th June 2020
Question-Answer Session :
Is
immunoglobulin
in short supply due to covid-19? It is always in short supply. Patients with CLL are a priority if they have an infection. So covid-19 has not affected the availability of
immunoglobulin
to CLL patients.
Question-Answer Session :
Is
immunoglobulin
in short supply due to covid-19? It is always in short supply. Patients with CLL are a priority if they have an infection. So covid-19 has not affected the availability of
immunoglobulin
to CLL patients.
Davdow
in
CLL Support
4 years ago
iNR
Hi! I first wanted to thank everyone on this forum, for educating me on APS. I had two positive blood tests - B2Gp1 IgM - seven years ago and I was not medicated. My other APS antibodies were WNL. This June - I had an unexpected stroke - which is odd at age 51 with no heart issues. I was given an APS
Hi! I first wanted to thank everyone on this forum, for educating me on APS. I had two positive blood tests - B2Gp1 IgM - seven years ago and I was not medicated. My other APS antibodies were WNL. This June - I had an unexpected stroke - which is odd at age 51 with no heart issues. I was given an APS
Uzoigwe
in
Hughes Syndrome APS Forum
4 years ago
T4 Again or with T3?
Here are my results from a week ago: TSH 0.010 -Low – ref. range-0.450 UIU/mL Thyroxine (T4) 7.3 ug/dL - ref. range 4.5 ug/dL – 12.0 ug/dL Triodothyronine (T3) 170 ng/dL – ref. range 71 ng/dl - 180 ng/dL
Immunoglobulin
G, Qn, Serum – 1054 – 603 mg/dL – 1613 mg/dL My "problem" is this: I'm taking
Here are my results from a week ago: TSH 0.010 -Low – ref. range-0.450 UIU/mL Thyroxine (T4) 7.3 ug/dL - ref. range 4.5 ug/dL – 12.0 ug/dL Triodothyronine (T3) 170 ng/dL – ref. range 71 ng/dl - 180 ng/dL
Immunoglobulin
G, Qn, Serum – 1054 – 603 mg/dL – 1613 mg/dL My "problem" is this: I'm taking
GKeith
in
Thyroid UK
4 years ago
Tiny flame of hope
Hello, it’s me again. I wanted to share something somewhat encouraging even though it doesn’t count. There was one test that my Rheumatologist didn’t post and I asked for it even though I was expecting to see a negative and it was the cardiolipin antibodies. My only positive result was an IGM of 13.
Hello, it’s me again. I wanted to share something somewhat encouraging even though it doesn’t count. There was one test that my Rheumatologist didn’t post and I asked for it even though I was expecting to see a negative and it was the cardiolipin antibodies. My only positive result was an IGM of 13.
JennaShi
in
LUPUS UK
4 years ago
Persistence Paid Off
Hello fellow loopies. Got my first dose of IVIG for cranial and autonomic neuropathy over the last 2 days. No side effects so far. Not even a headache... I’ll keep my fingers crossed and stay hydrated. Wondering if anyone has had IVIG for NPSLE? I know some people get it for PID but at a lower dose
Hello fellow loopies. Got my first dose of IVIG for cranial and autonomic neuropathy over the last 2 days. No side effects so far. Not even a headache... I’ll keep my fingers crossed and stay hydrated. Wondering if anyone has had IVIG for NPSLE? I know some people get it for PID but at a lower dose
Jmiller623
in
LUPUS UK
4 years ago
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