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Raynauds....The begginiing stage of oh so much more to come!
Hi everyone- I have been a member for sometime, but have just hung back and read everyone's post rather than posting on my own. I decided it's time to get serious about this. I have MCTD which includes Lupus, Scleroderma, Raynauds, Dermatomyositis and five more of these wonderful titles that just basically
Hi everyone- I have been a member for sometime, but have just hung back and read everyone's post rather than posting on my own. I decided it's time to get serious about this. I have MCTD which includes Lupus, Scleroderma, Raynauds, Dermatomyositis and five more of these wonderful titles that just basically
Toniraquel
in
Scleroderma & Raynaud's UK (SRUK)
12 years ago
Saw hematologist, eek!, am not sure......
She told me not to worry about my antiphospholipid IgM count of 118 (here in States 20 or below is normal). I have been and am concerned. She kind of brushed me off, but is doing in depth tests and wants me back in 2 months. She agrees I can't take any meds (warfarin or heparin) because I am also
She told me not to worry about my antiphospholipid IgM count of 118 (here in States 20 or below is normal). I have been and am concerned. She kind of brushed me off, but is doing in depth tests and wants me back in 2 months. She agrees I can't take any meds (warfarin or heparin) because I am also
Leigha
in
Hughes Syndrome APS Forum
12 years ago
Rituximab,Toxilizumab,and the Scleroderma Conference in Texas!
Over the years I have been on Azathioprine,Methotrexate, Mycophenelate Mofetil, Cyclophosphomide,
immunoglobulin
,and most recently Rituximab! I'm not sure I'm not just poisoning myself to death!
Over the years I have been on Azathioprine,Methotrexate, Mycophenelate Mofetil, Cyclophosphomide,
immunoglobulin
,and most recently Rituximab! I'm not sure I'm not just poisoning myself to death!
Alexandra-M
in
Scleroderma & Raynaud's UK (SRUK)
12 years ago
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suggest me about revolade in children, my daughter is suffering from itp since four years, she has taken Retuximab, IVIG, Steriode, Anti -D
suggest me about revolade in children, my daughter is suffering from itp since four years, she has taken Retuximab, IVIG, Steriode, Anti -D. she suffer from ITP in 4 years old now she is 8 years. her plts acount are between 15000 - 20000 only.
suggest me about revolade in children, my daughter is suffering from itp since four years, she has taken Retuximab, IVIG, Steriode, Anti -D. she suffer from ITP in 4 years old now she is 8 years. her plts acount are between 15000 - 20000 only.
Purpura1
in
ITP Support Association
12 years ago
whats everyones thoughts on cyclosporine, tried promacta, ivig, n plate, everything, seems cyclosporine is keeping my wife at good levels
musicguy60
in
ITP Support Association
12 years ago
Ivig?
Hi, sorry for all the questions. I'm running ahead of myself but I really don't want to go down the steroid or immune supressent route. My friend said at the hospital she goes to some people with behcets go and have ivig which works well for them. I already have thin bones and am worried what steroids
Hi, sorry for all the questions. I'm running ahead of myself but I really don't want to go down the steroid or immune supressent route. My friend said at the hospital she goes to some people with behcets go and have ivig which works well for them. I already have thin bones and am worried what steroids
vikkilouise
in
Behçet's UK
12 years ago
What next?
Hi all, my husband (34yrs, very, very fit and healthy man with the exception of ITP) has had ITP for just over a year and a half. He has tried (in order) prednisolone, Ivig, menthol prednisolone, eltrombopag, romoplostim. None of which has worked. During this time his platelet counts has been as high
Hi all, my husband (34yrs, very, very fit and healthy man with the exception of ITP) has had ITP for just over a year and a half. He has tried (in order) prednisolone, Ivig, menthol prednisolone, eltrombopag, romoplostim. None of which has worked. During this time his platelet counts has been as high
clh02
in
ITP Support Association
12 years ago
The Thief of Many Lives By Kathleen Houghton
I am constantly on the prowl in search of new victims. I do not discriminate--health care workers, teachers, students, airline personnel, teens, and innocent children are my prey. If you are dynamic and have a lust for life, I will seek you out, and I will find you. Just when you are at the peak
I am constantly on the prowl in search of new victims. I do not discriminate--health care workers, teachers, students, airline personnel, teens, and innocent children are my prey. If you are dynamic and have a lust for life, I will seek you out, and I will find you. Just when you are at the peak
keno25
in
Fibromyalgia Action UK
12 years ago
Our Son Has Chronic ITP
hi our lille child was diagnosed with ITP in April 2910, he had just turned 3 in the Jan, his platelet count was 3!!! we noticed the bruises then the rash covered his body. The docs tried prednisolone many time, which was unsuccessful, platelets olny reached 28 and dropped while he was still
hi our lille child was diagnosed with ITP in April 2910, he had just turned 3 in the Jan, his platelet count was 3!!! we noticed the bruises then the rash covered his body. The docs tried prednisolone many time, which was unsuccessful, platelets olny reached 28 and dropped while he was still
catherineb
in
ITP Support Association
12 years ago
trying revolade
hi have just been diagnosed with ITP had steroids and immunoglobulins none of these treatments worked had bone marrow test and platelet transfusion on thursday my consultant is going to try me this week with revolade wondering if anyone else has tried this thanks salmagal
hi have just been diagnosed with ITP had steroids and immunoglobulins none of these treatments worked had bone marrow test and platelet transfusion on thursday my consultant is going to try me this week with revolade wondering if anyone else has tried this thanks salmagal
salmagal
in
ITP Support Association
12 years ago
I have a letter from my specialist and dont understand it, just wondered if any body can shed some light on it please.
I have a appointment on moday but its doing my head in. I know none of you are doctors but i am hoping someone else will know something. This is my letter. This patients serum immunoglobulins and complement were normal. Adjusted calcium was on the low side. Thyroid peroxidase antibodies were positive
I have a appointment on moday but its doing my head in. I know none of you are doctors but i am hoping someone else will know something. This is my letter. This patients serum immunoglobulins and complement were normal. Adjusted calcium was on the low side. Thyroid peroxidase antibodies were positive
jazher
in
Fibromyalgia Action UK
12 years ago
New to APS and terrifie.
Hi. My name is Linda. I'm from Ohio. I just got my test results today and found that my Beta 2 Glycoprotein IgM is high for the second time since the first test, so the doctor has diagnosed me with APS (the lab doctor, not my vasculitic doctor so far). I'm terrified as I cannot take blood thinners
Hi. My name is Linda. I'm from Ohio. I just got my test results today and found that my Beta 2 Glycoprotein IgM is high for the second time since the first test, so the doctor has diagnosed me with APS (the lab doctor, not my vasculitic doctor so far). I'm terrified as I cannot take blood thinners
Lindajoy
in
Hughes Syndrome APS Forum
12 years ago
Does anyone has had a plasmapheresis and antiphospholipid syndrome??
I´ve had a miscarriage due to my IgG and IgM high levels. I want to make a second try and my doctor had recommended a plasmapheresis therapy first to clean up my body. Does anyone has done this??
I´ve had a miscarriage due to my IgG and IgM high levels. I want to make a second try and my doctor had recommended a plasmapheresis therapy first to clean up my body. Does anyone has done this??
yazel50
in
Hughes Syndrome APS Forum
12 years ago
test results ???
well got a letter from my specialist today obviously the one that he sent to the doc ,, has me diagnosised with pbc and perivous alohol excess lol like we dont all have that now an then .. apparently my bilirubin is 54,ALT 190,Alk.Phosphatase 1101, Gamma GT 527
well got a letter from my specialist today obviously the one that he sent to the doc ,, has me diagnosised with pbc and perivous alohol excess lol like we dont all have that now an then .. apparently my bilirubin is 54,ALT 190,Alk.Phosphatase 1101, Gamma GT 527
michalax
in
PBC Foundation
12 years ago
I have been admitted to hospital 6 times in the last 15 months. How do you cope when you are frightened by not knowing the next step?
15 months ago I had a platelet count of zero. I was put on prednisolone and my count went up then crashed to 2. I was then given IVIg but got meningitis and a retinal bleed and my platelets crashed to 3. I was then given rituximab and my count went up then crashed to 2 I then had a splenectomy and
15 months ago I had a platelet count of zero. I was put on prednisolone and my count went up then crashed to 2. I was then given IVIg but got meningitis and a retinal bleed and my platelets crashed to 3. I was then given rituximab and my count went up then crashed to 2 I then had a splenectomy and
NickyD
in
ITP Support Association
12 years ago
By how much do normal platelet counts generally fluctuate?
My four year old son had ITP. He went from having a platelet count of 8000 in May to 295K in December after an IVig treatment. Our doctor officially declared him an acute case at that point and said he is done with ITP! However, he just had his platelet count done today as he suffered a minor injury
My four year old son had ITP. He went from having a platelet count of 8000 in May to 295K in December after an IVig treatment. Our doctor officially declared him an acute case at that point and said he is done with ITP! However, he just had his platelet count done today as he suffered a minor injury
MaineMom3
in
ITP Support Association
12 years ago
Confused and worried
I was diagnosed with APS after having 3 miscarriages and raised Igm levels of 21. Apart from the miscarriages I feel fine, so Dr Khamashta said I have pregnancy/obstetric only APS and advised I take 75mg aspirin daily. I'm worried because I've been reading about some of the awful symptoms some of
I was diagnosed with APS after having 3 miscarriages and raised Igm levels of 21. Apart from the miscarriages I feel fine, so Dr Khamashta said I have pregnancy/obstetric only APS and advised I take 75mg aspirin daily. I'm worried because I've been reading about some of the awful symptoms some of
HWickers
in
Hughes Syndrome APS Forum
13 years ago
Antiphospholipid Antibodies
Hi my name is Beccy im 30years old and im from Bournemouth could anyone, give me some info on my ailement on Antiphospholipid Antibodies 7 moths agoi found out that i had a rash and i just been told that i got this condtions Livedo Reticularis. my blood count is entirely normal including
Hi my name is Beccy im 30years old and im from Bournemouth could anyone, give me some info on my ailement on Antiphospholipid Antibodies 7 moths agoi found out that i had a rash and i just been told that i got this condtions Livedo Reticularis. my blood count is entirely normal including
beccs1
in
Hughes Syndrome APS Forum
12 years ago
neurological symptoms
Hi I found out today I have Hughes syndrome after having 3 different elevated IgM anticardiolipin antibodies. The levels were 22, 19 and 14 so I think I'm of pretty low level. However I've been really ill all year starting with daily migraines for 3 months then having a possible transverse myelitis
Hi I found out today I have Hughes syndrome after having 3 different elevated IgM anticardiolipin antibodies. The levels were 22, 19 and 14 so I think I'm of pretty low level. However I've been really ill all year starting with daily migraines for 3 months then having a possible transverse myelitis
miffy
in
Hughes Syndrome APS Forum
12 years ago
Newbie
In June he had Kawazaki disease which is treated with intravenous
immunoglobulin
which has given us the best 6 months with his asthma yet, but now the effects of this have worn off and I feel we are back to being uncontrolled.
In June he had Kawazaki disease which is treated with intravenous
immunoglobulin
which has given us the best 6 months with his asthma yet, but now the effects of this have worn off and I feel we are back to being uncontrolled.
Hidden
in
Asthma Community Forum
17 years ago
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