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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
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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
Immunoglobulin numbers changing - Flare?
So, my doctor and I are wondering if the change in
immunoglobulin
levels is another way of identifying and monitoring my Lupus flares. IgG is a known player, not sure about IgM. They aren’t a way to measure my Spondylitis status, but a SpA flare is so easy for me to peg I’m not concerned.
So, my doctor and I are wondering if the change in
immunoglobulin
levels is another way of identifying and monitoring my Lupus flares. IgG is a known player, not sure about IgM. They aren’t a way to measure my Spondylitis status, but a SpA flare is so easy for me to peg I’m not concerned.
katidid
in
LUPUS UK
4 years ago
IVIG Infusions Suspended - Covid
My IVIG Infusions were suspended as a result of COVID and the risk of attending hospital at the hight of the pandemic. I have just received my latest blood report to find that my IgG is at 2.3, well below the minimum of 5. So will be asking for my monthly infusions to be reinstated. Anyone in the
My IVIG Infusions were suspended as a result of COVID and the risk of attending hospital at the hight of the pandemic. I have just received my latest blood report to find that my IgG is at 2.3, well below the minimum of 5. So will be asking for my monthly infusions to be reinstated. Anyone in the
RobertCLL
in
CLL Support
4 years ago
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
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
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