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My platelets are now 42 after having bloods today ( dropped since ivig as it was a short term solution ) I am not too concerned my hemotologist mentioned we need to look at options I am quite happy to just get monitered but she mentioned holigistic approach as I had bad reactions with ivig drip and steroids
My platelets are now 42 after having bloods today ( dropped since ivig as it was a short term solution ) I am not too concerned my hemotologist mentioned we need to look at options I am quite happy to just get monitered but she mentioned holigistic approach as I had bad reactions with ivig drip and steroids
Topography52_-
in
ITP Support Association
7 years ago
I just finished Cycle 6th on my Venetoclax plus Ibruvica trial. So far so good!!
Hello, As an update I just went to the doctors and my numbers are good. WBC was 1.9. ALC 0.9 WBC was 50 when i started in January. My Nodes were very large though. I just finished Cycle 6th on my Venetoclax plus Ibruvica trial. I was Nuetropenic so they gave me a shot to boost my ANC and
Hello, As an update I just went to the doctors and my numbers are good. WBC was 1.9. ALC 0.9 WBC was 50 when i started in January. My Nodes were very large though. I just finished Cycle 6th on my Venetoclax plus Ibruvica trial. I was Nuetropenic so they gave me a shot to boost my ANC and
Hoffy
in
CLL Support
7 years ago
Just diagnosed with APS
Hello all, I was recently diagnosed with APS. I am 43 and live in Canada. I had a stroke and MRI actually showed multiple strokes. Feel very lucky that they didnt affect me much, other than some minor issues with my vision and headaches. The stroke made the doctors here look at my medical history, going
Hello all, I was recently diagnosed with APS. I am 43 and live in Canada. I had a stroke and MRI actually showed multiple strokes. Feel very lucky that they didnt affect me much, other than some minor issues with my vision and headaches. The stroke made the doctors here look at my medical history, going
ellochka99
in
Hughes Syndrome APS Forum
7 years ago
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High fever as side effect of Ibrutinib ?
Hi, I'm new here and follow this blog with great interest. I had 6 cycles of FCR 5 years ago which gave me 5 years of a nice remission. For the last 2 years I am on monthly IVIG because of frequent pneumonias. Helped really good. Now my CLL has returned . 4 months ago a low grade fever started , about
Hi, I'm new here and follow this blog with great interest. I had 6 cycles of FCR 5 years ago which gave me 5 years of a nice remission. For the last 2 years I am on monthly IVIG because of frequent pneumonias. Helped really good. Now my CLL has returned . 4 months ago a low grade fever started , about
GIDI
in
CLL Support
7 years ago
Update- Diagnosis turned out to Guillain Barre Syndrome
I took my husband to the ER Wednesday because his condition had gotten so bad. He could barely walk and it was starting to affect his arms. The neurologist examined him and said he thought it was Guillain Barre Syndrome but had to rule out MS and ALS. So, after a CT scan, a spinal tap, MRI and a nerve
I took my husband to the ER Wednesday because his condition had gotten so bad. He could barely walk and it was starting to affect his arms. The neurologist examined him and said he thought it was Guillain Barre Syndrome but had to rule out MS and ALS. So, after a CT scan, a spinal tap, MRI and a nerve
leesielocket
in
Pernicious Anaemia Society
7 years ago
sorry, another APS question
Hi I wondered if anyone could help me understand these test results. I was told on the phone last week that my 3 APS antibody tests were negative. But I picked up a print-out of the results today, so that I can take them to the rheumatology appointment in a few weeks. And now Im confused. The results
Hi I wondered if anyone could help me understand these test results. I was told on the phone last week that my 3 APS antibody tests were negative. But I picked up a print-out of the results today, so that I can take them to the rheumatology appointment in a few weeks. And now Im confused. The results
charlieab
in
Hughes Syndrome APS Forum
7 years ago
My mom and son both have ITP. Anyone else?
My 11 month old son was diagnosed with ITP almost 2 months ago. He was admitted to the hospital with platelets of 5000, given 3 courses of IVIG and started on steroids before his body responded. Last platelet count was 300,000 (woohoo!!!). This past week, my mother was also admitted with platelets
My 11 month old son was diagnosed with ITP almost 2 months ago. He was admitted to the hospital with platelets of 5000, given 3 courses of IVIG and started on steroids before his body responded. Last platelet count was 300,000 (woohoo!!!). This past week, my mother was also admitted with platelets
Kelly109
in
ITP Support Association
7 years ago
Any feel strange dull pain in lymph nodes in treatment as they clear out?
I am on both Imbruvica and full Venetoclax now. I on my 6th cycle of the clinical trial. Over all I have been very good. My numbers have rapidly gone to normal. WBC 2.1 ALC 1.2, PLT a little low at 110. Others are good. IGA, IGG, IGM are improving as well. I have been on full Venetoclax for 2 months
I am on both Imbruvica and full Venetoclax now. I on my 6th cycle of the clinical trial. Over all I have been very good. My numbers have rapidly gone to normal. WBC 2.1 ALC 1.2, PLT a little low at 110. Others are good. IGA, IGG, IGM are improving as well. I have been on full Venetoclax for 2 months
Hoffy
in
CLL Support
7 years ago
Ivig
I read all the time of peoples counts going up by the hundreds after ivig drip mine only went to 210 any thoughts please obviously mine have now dropped I am just curious why some people see a significant boost and others not : (
I read all the time of peoples counts going up by the hundreds after ivig drip mine only went to 210 any thoughts please obviously mine have now dropped I am just curious why some people see a significant boost and others not : (
Topography52_-
in
ITP Support Association
7 years ago
Migratory joint pain.
I have had fe and scattered episodes of migratory joking ain and sw long. Right now it is the lateral aspect of my right wrist, on the iulnar sidev 😢 I was wondering if anyone else is having this. Last time I had it is was on the top or dorsal aspect of the same hand. It is very painful and refractory
I have had fe and scattered episodes of migratory joking ain and sw long. Right now it is the lateral aspect of my right wrist, on the iulnar sidev 😢 I was wondering if anyone else is having this. Last time I had it is was on the top or dorsal aspect of the same hand. It is very painful and refractory
usapajgy
in
CLL Support
7 years ago
Vacation
I have had CLL a couple of years now. I am a year and a half post FCR, and it has worked despite the fact that I am unmutated. I do tend to get infections a great deal, and IVIG helps tremendously. Here is my question. We are heading to Idaho for the lakes and mountains. I worry about infections
I have had CLL a couple of years now. I am a year and a half post FCR, and it has worked despite the fact that I am unmutated. I do tend to get infections a great deal, and IVIG helps tremendously. Here is my question. We are heading to Idaho for the lakes and mountains. I worry about infections
beanlake14
in
CLL Support
7 years ago
Acalabrutinib results, two years this coming August 3.
It has been almost two years since I began the trial with Acalabrutinib, my fourth round of treatment. My counts are all within normal range, and my CD19 has decreased exponentially since the peak lymphocyte count, some two months after I began the study. CD4/CD8 ratio has not improved one whit, nor
It has been almost two years since I began the trial with Acalabrutinib, my fourth round of treatment. My counts are all within normal range, and my CD19 has decreased exponentially since the peak lymphocyte count, some two months after I began the study. CD4/CD8 ratio has not improved one whit, nor
Ramses
in
CLL Support
7 years ago
Test results and what to ask next
Hi. I finally got ahold of my test results from 4 weeks ago. With these results and a few abnormalities with liver and protein tests the doc was going to just ask me back in 3 months like the test results suggested. When I started asking what could she do for my symptoms now and listed a few of them
Hi. I finally got ahold of my test results from 4 weeks ago. With these results and a few abnormalities with liver and protein tests the doc was going to just ask me back in 3 months like the test results suggested. When I started asking what could she do for my symptoms now and listed a few of them
AngieAsh
in
Thyroid UK
7 years ago
Fall i platelets count after ivig treatment
My platelates fall upto 2000 then after transfusion treated with ivig treatment. My platelates level rises upto 1.4 lakh with in a month but after that falls to 40 thouand. I m on depsone 100 mg. Im worried now please comment is this fall and rise is common in itp
My platelates fall upto 2000 then after transfusion treated with ivig treatment. My platelates level rises upto 1.4 lakh with in a month but after that falls to 40 thouand. I m on depsone 100 mg. Im worried now please comment is this fall and rise is common in itp
Vika0001
in
ITP Support Association
7 years ago
My daughter is doing well. Thanks for your blessings
Dear all ... Here is update regarding my daughter . As you all know , in Nov,16.. her hematologist made her stopped all medications after gradually tapering her steroid doses from Aug .. when she was diagnosed with ITP at 4000 count and got IVIG infusion. In Dec ,We took her to Gayatri Institute ,
Dear all ... Here is update regarding my daughter . As you all know , in Nov,16.. her hematologist made her stopped all medications after gradually tapering her steroid doses from Aug .. when she was diagnosed with ITP at 4000 count and got IVIG infusion. In Dec ,We took her to Gayatri Institute ,
Toughytoughy
in
ITP Support Association
7 years ago
Searching for a cure for APS
Last week I met with my hematologist. He said I had had the trifecta of antibodies with my last stroke. The blood test results were: Anti-Cardio IGG >=40 Anti-Cardio IGA <11 Antiphospholipid Antibodies IgM or IgG ACA>40 MPL/GPI, IgM or IgG anti-B2GPI antibodies, or a Lupus anticoagulant. I do not
Last week I met with my hematologist. He said I had had the trifecta of antibodies with my last stroke. The blood test results were: Anti-Cardio IGG >=40 Anti-Cardio IGA <11 Antiphospholipid Antibodies IgM or IgG ACA>40 MPL/GPI, IgM or IgG anti-B2GPI antibodies, or a Lupus anticoagulant. I do not
ken42
in
Hughes Syndrome APS Forum
7 years ago
ITP DISORDER OF MY SON
Dear sir My name is Shilpi and I am from India. I have a son whose age is 6.6 years. Recently on 13th June I observed redish and blackish spots over his hands and legs. I took child specialist on 17th June to show these spots and he asked us for cbp done. In cbp report we found that his platelet were
Dear sir My name is Shilpi and I am from India. I have a son whose age is 6.6 years. Recently on 13th June I observed redish and blackish spots over his hands and legs. I took child specialist on 17th June to show these spots and he asked us for cbp done. In cbp report we found that his platelet were
Shilpid
in
ITP Support Association
7 years ago
IVIG with Imbruvica
I have been on IVIG 10+ years, starting with only cold seasonal treatment. I have been on IVIG 30 grams q 28 days continuously for almost 6 years. I started Imbruvica 14 days ago due to my first leukemia recurrence since remission, 2011. Yesterday morning, 6/27/17, I had my first IVIG since starting
I have been on IVIG 10+ years, starting with only cold seasonal treatment. I have been on IVIG 30 grams q 28 days continuously for almost 6 years. I started Imbruvica 14 days ago due to my first leukemia recurrence since remission, 2011. Yesterday morning, 6/27/17, I had my first IVIG since starting
W00dfin
in
CLL Support
7 years ago
Need advice on treatment options for relapsed SLL
I will be going for a follow-up visit with my specialist at UPENN after new blood work to check for mutations and to discuss treatment options. My questions is: Based upon my SLL parameters what drugs other than ibrutinib may be an option? I am a female 63, diagnosed in 2008 with SLL. I was treated
I will be going for a follow-up visit with my specialist at UPENN after new blood work to check for mutations and to discuss treatment options. My questions is: Based upon my SLL parameters what drugs other than ibrutinib may be an option? I am a female 63, diagnosed in 2008 with SLL. I was treated
ReneeSusan
in
CLL Support
7 years ago
Oncologist told my Stepdad there is nothing else he can do for him.
My Stepdad was diagnosed last August with stage 4 prostate cancer that metastasized to his bones. They started him on taxatere* and his platelets levels wouldn't remain high enough for him to continue receiving the treatment. He then started him on Lupron and Zyriga I believe in which he had an awesome
My Stepdad was diagnosed last August with stage 4 prostate cancer that metastasized to his bones. They started him on taxatere* and his platelets levels wouldn't remain high enough for him to continue receiving the treatment. He then started him on Lupron and Zyriga I believe in which he had an awesome
lkw16
in
Advanced Prostate Cancer
7 years ago
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