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Itp verses sle
I have primary sle and secondary Itp, recently my sle had been in remission but my Itp had been uncontrollable I have tried every treatment medication, rituximab nothing works and my body now rejects prednisalone, so I have to have ivig, I had my last one last week and my platelets are up to 93 which
I have primary sle and secondary Itp, recently my sle had been in remission but my Itp had been uncontrollable I have tried every treatment medication, rituximab nothing works and my body now rejects prednisalone, so I have to have ivig, I had my last one last week and my platelets are up to 93 which
Manclady61
in
LUPUS UK
7 years ago
Update- Diagnosis turned out to Guillain Barre Syndrome
We stayed in the hospital from Wed. morning until this evening and he was given 4 days of
immunoglobulin
infusion (plasma through an iv) to stop his body from attacking itself. His symptoms are still the same but all we can do is wait for his body to repair itself.
We stayed in the hospital from Wed. morning until this evening and he was given 4 days of
immunoglobulin
infusion (plasma through an iv) to stop his body from attacking itself. His symptoms are still the same but all we can do is wait for his body to repair itself.
leesielocket
in
Pernicious Anaemia Society
7 years ago
Context change
Does anyone know how to change from CLL community to Waldenstroms? I was placed in CLL because it was the category I was looking at when I decided to join. I really am one who keeps track of IgM level
Does anyone know how to change from CLL community to Waldenstroms? I was placed in CLL because it was the category I was looking at when I decided to join. I really am one who keeps track of IgM level
Bbonal
in
CLL Support
7 years ago
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FISH test result changed post chemo
My first post! My husband was diagnosed with CLL in 2004. He had 6 rounds of FC and achieved a good remission. In 2010 he relapsed and had FRC again 6 rounds, again a very good remission. He is IVG mutated and FISH test was negative to all deletions. He is now out of remission. Has just had a FISH test
My first post! My husband was diagnosed with CLL in 2004. He had 6 rounds of FC and achieved a good remission. In 2010 he relapsed and had FRC again 6 rounds, again a very good remission. He is IVG mutated and FISH test was negative to all deletions. He is now out of remission. Has just had a FISH test
lemsford
in
CLL Support
7 years ago
Acalabrutinib results, two years this coming August 3.
CD4/CD8 ratio has not improved one whit, nor have
immunoglobulin
numbers, so I continue at increased risk of infection. Furthermore, I am about to have a basal cell carcinoma surgically excised.
CD4/CD8 ratio has not improved one whit, nor have
immunoglobulin
numbers, so I continue at increased risk of infection. Furthermore, I am about to have a basal cell carcinoma surgically excised.
Ramses
in
CLL Support
7 years ago
ITP , 6000 - 23000 platelet count, Age 69
Need proper diagnosis for my problem. 1. Initially when hospitalized not able to speak (may be bleeding in brain). Platelets count 4000, Got IVIG now able to speak (2 weeks before) 2. Had 30 units of Platelet transfusion in 10 days. 5 units Single Donor Platelet 3. Rose count from 6000 to 13000 with
Need proper diagnosis for my problem. 1. Initially when hospitalized not able to speak (may be bleeding in brain). Platelets count 4000, Got IVIG now able to speak (2 weeks before) 2. Had 30 units of Platelet transfusion in 10 days. 5 units Single Donor Platelet 3. Rose count from 6000 to 13000 with
RONALD-DASON-P
in
ITP Support Association
7 years ago
FCR after four years
When I was taken to the hospital with HB of 5.4 and Leukos 20.0 and lots of wrong b Cells, this was 9/2013, I had only little hope to recover again, as I was tested unmutated, CD 38 neg and ZAP 70 of 50% and Trisomie 12. I received 13 packs of Erytrocyt/Concentrate and 6 rounds of FCR. Only minor sideeffects
When I was taken to the hospital with HB of 5.4 and Leukos 20.0 and lots of wrong b Cells, this was 9/2013, I had only little hope to recover again, as I was tested unmutated, CD 38 neg and ZAP 70 of 50% and Trisomie 12. I received 13 packs of Erytrocyt/Concentrate and 6 rounds of FCR. Only minor sideeffects
seoul
in
CLL Support
7 years ago
blood test question
I just dug back through my blood tests, and found the ones that were negative, they were the cardiolipin IgG and IgM the lupus antio coagulant was not repeated at that time. what does it mean if you are positive lupus anticoagulant, but negative cardiolipin antibodies? I have a form to get bloods done
I just dug back through my blood tests, and found the ones that were negative, they were the cardiolipin IgG and IgM the lupus antio coagulant was not repeated at that time. what does it mean if you are positive lupus anticoagulant, but negative cardiolipin antibodies? I have a form to get bloods done
nuddle
in
Hughes Syndrome APS Forum
7 years ago
What is a severe case of APS?
So far going by the checklist from the symptoms sheet taken from here: http://www.aps-support.org.uk/about-aps/what-are-the-symptoms.php I had: 1. Multiple strokes, only the last one affected me, specifically, my vision, the rest I was unaware of, but an MRI was done at that time and it showed multiple
So far going by the checklist from the symptoms sheet taken from here: http://www.aps-support.org.uk/about-aps/what-are-the-symptoms.php I had: 1. Multiple strokes, only the last one affected me, specifically, my vision, the rest I was unaware of, but an MRI was done at that time and it showed multiple
ellochka99
in
Hughes Syndrome APS Forum
7 years ago
Results
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
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
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
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
Further necessary tests for PA
Do I now need the Homosyctein and the other one mentioned -
Immunoglobulin
(sp ?) I'm determined to be proactive as I've other autoimmune diseases to deal with too! SM
Do I now need the Homosyctein and the other one mentioned -
Immunoglobulin
(sp ?) I'm determined to be proactive as I've other autoimmune diseases to deal with too! SM
CCSP-27
in
Pernicious Anaemia Society
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
Oncologist told my Stepdad there is nothing else he can do for him.
His blood levels also stabalized and he ceased needing blood transfusions but continued to get
immunoglobulin
infusions.
His blood levels also stabalized and he ceased needing blood transfusions but continued to get
immunoglobulin
infusions.
lkw16
in
Advanced Prostate Cancer
7 years ago
gh intravenous immunoglobulin
Has anyone heard of using intravenous
immunoglobulin
treatments for PMR? They say it's a great treatment for autoimmune conditions.
Has anyone heard of using intravenous
immunoglobulin
treatments for PMR? They say it's a great treatment for autoimmune conditions.
jwb43
in
PMRGCAuk
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
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