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I've taken the in-house antibody test
Even after 6 years of GCA and daily pred and monthly blood tests. I still find it difficult to have blood take from me. That's what the antibody test required and it took a week for me to summon up the courage for the tiny finger prick. After the traumatic experience I had to take a photo of the blood
Even after 6 years of GCA and daily pred and monthly blood tests. I still find it difficult to have blood take from me. That's what the antibody test required and it took a week for me to summon up the courage for the tiny finger prick. After the traumatic experience I had to take a photo of the blood
Roy46
in
PMRGCAuk
4 years ago
IVIG Infusion
Has anyone had the IVIG infusion? If so, what was it like? Did it help?
Has anyone had the IVIG infusion? If so, what was it like? Did it help?
Dermatray15
in
Lung Conditions Community Forum
4 years ago
2019-2020 a comparison
following two emergency admissions, failed chemo, massive reduction of platelets and heamaglobin, weekly blood transfusions monthly IVIG in 2019, I find myself taking 'targeted therapy' on week 16 of 'shielding' and pondering do I really want to go back to work? meanwhile, family life rolls on!
following two emergency admissions, failed chemo, massive reduction of platelets and heamaglobin, weekly blood transfusions monthly IVIG in 2019, I find myself taking 'targeted therapy' on week 16 of 'shielding' and pondering do I really want to go back to work? meanwhile, family life rolls on!
Meic13
in
Cancer Journeys Foundation
4 years ago
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IVIG HELP
I have low IGG so I have IVIG every other month. I have to take it with a 25 drip or I get bad side effects It takes 8 hours for the infusion I’m given Tylenol and Benadryl before the infusion It takes me about 6 days to recover from the infusion I experience fevers, headaches, and my eyes are sensitive
I have low IGG so I have IVIG every other month. I have to take it with a 25 drip or I get bad side effects It takes 8 hours for the infusion I’m given Tylenol and Benadryl before the infusion It takes me about 6 days to recover from the infusion I experience fevers, headaches, and my eyes are sensitive
Kyranbigeyes
in
CLL Support
4 years ago
Sweat smells like ammonia
Hello to my fellow lupies! An update on neuro stuff.... still waiting to get IVIG set up. Have not been able to get in touch with neurologist since appt about 3 weeks ago. Rheum won’t write for it. Getting very frustrated and depressed by this whole situation. I keep physically declining. My vision
Hello to my fellow lupies! An update on neuro stuff.... still waiting to get IVIG set up. Have not been able to get in touch with neurologist since appt about 3 weeks ago. Rheum won’t write for it. Getting very frustrated and depressed by this whole situation. I keep physically declining. My vision
Jmiller623
in
LUPUS UK
4 years ago
Children: unusual symptoms? Is it possible PA?
Good evening. I wonder if i could get some guidance from this community. My 12 year old son has been struggling for years with his stomach nausea and low appetite. He also experience night terrors and episodes what he describes as “glitches” when he experience people’s voices racing and a loud bang to
Good evening. I wonder if i could get some guidance from this community. My 12 year old son has been struggling for years with his stomach nausea and low appetite. He also experience night terrors and episodes what he describes as “glitches” when he experience people’s voices racing and a loud bang to
jimckeown
in
Pernicious Anaemia Society
4 years ago
The good and the not so....
Just checking in to give my friends an update. I had results come back from my flow cytometry yesterday. Happy to say I am MRD negative and no cll cells detected. My Igg numbers dropped from 900 somethjng to 565. My IgM is 14 and IgA is 17. Not what I was hoping to see but super happy about my cll
Just checking in to give my friends an update. I had results come back from my flow cytometry yesterday. Happy to say I am MRD negative and no cll cells detected. My Igg numbers dropped from 900 somethjng to 565. My IgM is 14 and IgA is 17. Not what I was hoping to see but super happy about my cll
Downriver555
in
CLL Support
4 years ago
Vestibular problems
Hi everyone! Been a long time since I’ve posted. Interesting day today. Saw neuro ophthalmologist today. I have all types of nystagmus. Says it’s probably peripheral vestibular malfunction and maybe something wrong with my ear canals/bones. Wants brain MRI and possible CT angio since I have a small brain
Hi everyone! Been a long time since I’ve posted. Interesting day today. Saw neuro ophthalmologist today. I have all types of nystagmus. Says it’s probably peripheral vestibular malfunction and maybe something wrong with my ear canals/bones. Wants brain MRI and possible CT angio since I have a small brain
Jmiller623
in
LUPUS UK
4 years ago
Has anyone had issues with Hemolytic Anemia?
I am 8 1/2 years into my CLL diagnosis and turned 65 this year, I have had some recent problems with CLL cells appearing in some masses in both my feet and left ankle, but to have a biopsy last week they gave me 4 strong doses of IVIG to support my platelets (i have ITP) as well. I am quite dismayed
I am 8 1/2 years into my CLL diagnosis and turned 65 this year, I have had some recent problems with CLL cells appearing in some masses in both my feet and left ankle, but to have a biopsy last week they gave me 4 strong doses of IVIG to support my platelets (i have ITP) as well. I am quite dismayed
KevinCLLITP
in
CLL Support
4 years ago
Beta2Glycoprotein1 IgM positive for APS - anyone the same?
Hi ! I was recently diagnosed with APS after having a stroke. I tested positive only for Beta2 Glycoprotein1 Ig M. I tested positive for this 7 years ago, so it’s defiantly positive. Does Anyone tested positive for this one marker, and if so how are you treating it - what anti coagulant? Now I am on
Hi ! I was recently diagnosed with APS after having a stroke. I tested positive only for Beta2 Glycoprotein1 Ig M. I tested positive for this 7 years ago, so it’s defiantly positive. Does Anyone tested positive for this one marker, and if so how are you treating it - what anti coagulant? Now I am on
Uzoigwe
in
Hughes Syndrome APS Forum
4 years ago
Atypical cases of necrotizing sweet syndrome in patients with myelodysplastic syndrome and acute myeloid leukaemia
Aggressive management was started - intravenous steroids and
immunoglobulin
,and then dapsone. ADDITIONAL NOTES.
Aggressive management was started - intravenous steroids and
immunoglobulin
,and then dapsone. ADDITIONAL NOTES.
Shell567
Sweet's Syndrome UK
in
Sweet's Syndrome UK
4 years ago
ITP and Pregnancy
Hi! I've read through a number of the posts and found them very helpful. I'm 9 weeks pregnant and just found out that my platelet count is at 50. I'm going to see a hematologist and get their expert opinion, but my doctor said she felt that the most likely diagnosis was ITP secondary to an autoimmune
Hi! I've read through a number of the posts and found them very helpful. I'm 9 weeks pregnant and just found out that my platelet count is at 50. I'm going to see a hematologist and get their expert opinion, but my doctor said she felt that the most likely diagnosis was ITP secondary to an autoimmune
FromToronto
in
ITP Support Association
4 years ago
Help! - 12 year old RF + IgG 92.9 IgM 20 IgA 24.8 - but CCP test negative - symptoms of RA in Spine - but doctor thinks we are crazy!
So its been almost a year trying to figure out what has been wrong with my daughter - it started out last July (2019) with symptoms of dizziness, slight back pain, and numbness and tingling - we have now progressed to severe back pain (like she can't take it anymore) with more dizziness and now legs
So its been almost a year trying to figure out what has been wrong with my daughter - it started out last July (2019) with symptoms of dizziness, slight back pain, and numbness and tingling - we have now progressed to severe back pain (like she can't take it anymore) with more dizziness and now legs
lisamichel
in
JIA-at-NRAS
4 years ago
12 Year old daughter +RF- IgG 92.9 IgM 20 IgA 24.8 but CCP Negative - but many symptoms of RA - DR. thinks we are crazy.
So its been almost a year trying to figure out what has been wrong with my daughter - it started out last July (2019) with symptoms of dizziness, slight back pain, and numbness and tingling - we have now progressed to severe back pain (like she can't take it anymore) with more dizziness and now legs
So its been almost a year trying to figure out what has been wrong with my daughter - it started out last July (2019) with symptoms of dizziness, slight back pain, and numbness and tingling - we have now progressed to severe back pain (like she can't take it anymore) with more dizziness and now legs
lisamichel
in
NRAS
4 years ago
shielding letter at last
I suffer from Rituximab induced Hypogammaglobulinaemia so require
immunoglobulin
therapy weekly to maintain my immune system. Will need to be sure life outside is safe before I venture out into the world again. Wishing everyone well. Keep safe. Pam X
I suffer from Rituximab induced Hypogammaglobulinaemia so require
immunoglobulin
therapy weekly to maintain my immune system. Will need to be sure life outside is safe before I venture out into the world again. Wishing everyone well. Keep safe. Pam X
Pam-51
in
NRAS
4 years ago
What We Did Right: Israeli Doctors Explain How They Beat the Coronavirus
In the lull following the first infection wave, physicians tell Haaretz how they adjusted on the fly – and helped push Israel's number of new cases per day into the low double-digits 'We’ve also learned that you don’t have to rush into employing invasive ventilation methods. Eventually we began to
In the lull following the first infection wave, physicians tell Haaretz how they adjusted on the fly – and helped push Israel's number of new cases per day into the low double-digits 'We’ve also learned that you don’t have to rush into employing invasive ventilation methods. Eventually we began to
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
4 years ago
IGa levels
Had a blood test including testing for
immunoglobulin
. First time I've seen IG results so don't understand them as much as WBC etc. My IGa result is in red and is 0.84. I believe the normal range is from 1.0 Those of you that have IVg treatment.
Had a blood test including testing for
immunoglobulin
. First time I've seen IG results so don't understand them as much as WBC etc. My IGa result is in red and is 0.84. I believe the normal range is from 1.0 Those of you that have IVg treatment.
aloneifly
in
CLL Support
4 years ago
Ibrutinib - Joint Pain
I have had CLL for 20 years and have been on Ibrutinib for 3 years. In recent months I have been suffering with aches and pain in the wrists, hand knuckles, knees, ankles and shoulders. I have been treating the symptoms with oral paracetamol and more recently pulse dosing with oral Ibuprofen when symptoms
I have had CLL for 20 years and have been on Ibrutinib for 3 years. In recent months I have been suffering with aches and pain in the wrists, hand knuckles, knees, ankles and shoulders. I have been treating the symptoms with oral paracetamol and more recently pulse dosing with oral Ibuprofen when symptoms
RobertCLL
in
CLL Support
4 years ago
MUSINGS ON SUBCUTANEOUS IMMUNOGLOBULINS ON A RAINY DAY
Hello on this rainy World Lupus Day, mes amies. I love it when the weather chimes in with my symptoms. I am the rain today. I have had an ongoing roller coaster with respiratory infections since Christmas; every few weeks on antibiotics calms things down, and then up she flares again. All the same, I
Hello on this rainy World Lupus Day, mes amies. I love it when the weather chimes in with my symptoms. I am the rain today. I have had an ongoing roller coaster with respiratory infections since Christmas; every few weeks on antibiotics calms things down, and then up she flares again. All the same, I
lupusinflight
in
LUPUS UK
4 years ago
30 Israeli medical innovations to fight coronavirus
Kamada is developing a polyclonal
immunoglobulin
treatment for severely ill COVID-19 patients, using purified blood and plasma samples from recovered patients. Kamada previously developed serums for treating rabies and Zika.
Kamada is developing a polyclonal
immunoglobulin
treatment for severely ill COVID-19 patients, using purified blood and plasma samples from recovered patients. Kamada previously developed serums for treating rabies and Zika.
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
4 years ago
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