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Experiences with
Intravenous immunoglobulin (IVIg)
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Follicular Lymphoma Patient: 8-Year Treatment Experience
Her only side effect was low immunoglobulins that require an
IVIG
infusion every 4 months. In July 2019 she relapsed after 38+ months in remission. She qualified for a 2nd NIH CAR-T infusion under the same trial, this time at 6e6 CAR-T cells per kg body weight – a 10-fold increase.
Her only side effect was low immunoglobulins that require an
IVIG
infusion every 4 months. In July 2019 she relapsed after 38+ months in remission. She qualified for a 2nd NIH CAR-T infusion under the same trial, this time at 6e6 CAR-T cells per kg body weight – a 10-fold increase.
wmay13241
in
Non Hodgkin's Lymphoma Friends
5 years ago
I’m at my wits end
During that stay it was believed I had stiff person syndrome and was given one round of
IVIG
which has been the only drug that really seemed to work. However once that diagnosis was eliminated they refuse to even entertain the idea. I have a very complex medical history.
During that stay it was believed I had stiff person syndrome and was given one round of
IVIG
which has been the only drug that really seemed to work. However once that diagnosis was eliminated they refuse to even entertain the idea. I have a very complex medical history.
Stanleyleonard12
in
Functional Neurological Disorder - FND Hope
5 years ago
Problems with Neulasta after IVIG and in Ibrutinib
Neutrophils dropped over the last couple of months while on IBN so my doctors gave me a shot of Neulasta. I have ended up with weeks or achy bones, problems breathing, enhanced neuropathy and mouth sores, which are like blood blisters. My experience is that I have had lots of side effects from every
Neutrophils dropped over the last couple of months while on IBN so my doctors gave me a shot of Neulasta. I have ended up with weeks or achy bones, problems breathing, enhanced neuropathy and mouth sores, which are like blood blisters. My experience is that I have had lots of side effects from every
KevinCLLITP
in
CLL Support
5 years ago
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Just arrived!
I am susceptible to chest infections/pneumonia so I have
IVIG
infusion every 4 weeks to support my immune system. I am also susceptible to Basal Cell Carcinoma (skin cancer -usually harmless) as a result of sun damage and CLL, which is also treated at King’s.
I am susceptible to chest infections/pneumonia so I have
IVIG
infusion every 4 weeks to support my immune system. I am also susceptible to Basal Cell Carcinoma (skin cancer -usually harmless) as a result of sun damage and CLL, which is also treated at King’s.
Salvoboy
in
CLL Support
5 years ago
CAPS or Primary APS with Alveolar Hemorrhage
Looking for treatment options .... we have done Plasmapheresis, Rituxan, Steroids, Plaquenil, Azathioprine and the Rheumy is now talking of doing
IVIG
if tomorrows blood work doesn't show an improvement in platelets. Anyone have any experience with any of this??
Looking for treatment options .... we have done Plasmapheresis, Rituxan, Steroids, Plaquenil, Azathioprine and the Rheumy is now talking of doing
IVIG
if tomorrows blood work doesn't show an improvement in platelets. Anyone have any experience with any of this??
kiminabmw
in
Hughes Syndrome APS Forum
5 years ago
IVIG?
There is a nationwide shortage here for
IVIG
. I was receiving it every month for at least 1 year. It was helping. USA here. How is it going in UK?
There is a nationwide shortage here for
IVIG
. I was receiving it every month for at least 1 year. It was helping. USA here. How is it going in UK?
nanno
in
LUPUS UK
5 years ago
Immune Function Improvements
- https://www.patientpower.info/video/can-
ivig
-improve-immune-function?autoplay=1 Can
IVIG
Improve Immune Function? Thomas Kipps, MD, PhD Published: June 19, 2018 How can patients rebuild their health after CLL treatment? Noted CLL expert Dr.
- https://www.patientpower.info/video/can-
ivig
-improve-immune-function?autoplay=1 Can
IVIG
Improve Immune Function? Thomas Kipps, MD, PhD Published: June 19, 2018 How can patients rebuild their health after CLL treatment? Noted CLL expert Dr.
lankisterguy
Volunteer
in
CLL Support
5 years ago
Anti-Purkinge
For five days last week I had
IVIg
treatment I have to have blood test in August to see if it worked on Anti-Purkinge and if so the treatment will be repeated. I have Cerebella Atrophy associated with Anti-Purkinge it will take 4-6weeks to work.
For five days last week I had
IVIg
treatment I have to have blood test in August to see if it worked on Anti-Purkinge and if so the treatment will be repeated. I have Cerebella Atrophy associated with Anti-Purkinge it will take 4-6weeks to work.
Jacqui-A
in
Ataxia UK
5 years ago
No Diagnosis
Neurologists have tried plasma exchange,
ivig
, and given all MRI's CT scans etc. No one seems to be motioning in the direction of PSP other than the first neurologist who asked for second and third opinions. I think my friend wants to know but is afraid to know... and so not pushing it.
Neurologists have tried plasma exchange,
ivig
, and given all MRI's CT scans etc. No one seems to be motioning in the direction of PSP other than the first neurologist who asked for second and third opinions. I think my friend wants to know but is afraid to know... and so not pushing it.
Mybeautifulfriend
in
PSP Association
5 years ago
NEW CONSULTANT
My husband had his appointment with his new consultant on Friday and is still in remission, but felt he should see an Immunologist as he had a number of infections lasting 4months. Today my husband has received a letter from him stating that he has done a referral in view he is pan-hypoglobulinemic.
My husband had his appointment with his new consultant on Friday and is still in remission, but felt he should see an Immunologist as he had a number of infections lasting 4months. Today my husband has received a letter from him stating that he has done a referral in view he is pan-hypoglobulinemic.
very
in
CLL Support
5 years ago
IVIG Anyone?
Hello, Has anyone had any success with
ivig
? I have polymyositis and was just in hospital for around a week for respiratory failure type 2, and was given 3 x 500ml of steroids, then 3 days of
ivig
. My oxygen was down to 70% sometimes, but mostly in the 80s.
Hello, Has anyone had any success with
ivig
? I have polymyositis and was just in hospital for around a week for respiratory failure type 2, and was given 3 x 500ml of steroids, then 3 days of
ivig
. My oxygen was down to 70% sometimes, but mostly in the 80s.
ClareR12345
in
Myositis UK
5 years ago
Balance and Unsteadiness. Floaty. Help?
I had meningitis 6 months ago from
IVIG
medication. LP they thought it may have been viral but then later called it asceptic. I initially developed tremors, and my trunk/head kept swaying. Light flashes and falling. Those went away but now... The proprioception on my right body feels off.
I had meningitis 6 months ago from
IVIG
medication. LP they thought it may have been viral but then later called it asceptic. I initially developed tremors, and my trunk/head kept swaying. Light flashes and falling. Those went away but now... The proprioception on my right body feels off.
David_101
in
Meningitis Now
5 years ago
COCO, RAIN CLOUDS AND POKÉMON HUNTING
I am on a low dose of Myfortic, I continue with
IVIg
and I want to believe all traces of campylobacter have been obliterated from my bloodstream. For now, that’s enough.
I am on a low dose of Myfortic, I continue with
IVIg
and I want to believe all traces of campylobacter have been obliterated from my bloodstream. For now, that’s enough.
lupusinflight
in
LUPUS UK
5 years ago
Students
I was put forward for
IVIg
treatment in January and I’m still waiting has anyone else had this treatment and if so did it help? I have Cerebella Atrophy only diagnosed last October after knowing something was wrong and the last couple of days haven’t been good.
I was put forward for
IVIg
treatment in January and I’m still waiting has anyone else had this treatment and if so did it help? I have Cerebella Atrophy only diagnosed last October after knowing something was wrong and the last couple of days haven’t been good.
Jacqui-A
in
Ataxia UK
5 years ago
Something extra to think about
She had a course if Intravenous immuno gamma globulin (
Ivig
) and drives now and has done so for years. Tell your family that your condition is not hopeless. Be honest, this is only Relapsing Remitting ms(RRMS) :YOU” can learn how to cope and adjust.
She had a course if Intravenous immuno gamma globulin (
Ivig
) and drives now and has done so for years. Tell your family that your condition is not hopeless. Be honest, this is only Relapsing Remitting ms(RRMS) :YOU” can learn how to cope and adjust.
RoyceNewton
in
My MSAA Community
5 years ago
Ibrutnib
I do, though, get
IVIG
and I take Bactrim and Valtrex.
I do, though, get
IVIG
and I take Bactrim and Valtrex.
Pepper122
in
CLL Support
5 years ago
With a CLL diagnosis, knowing more about your immune system could save your life!
Ontario study showing benefits https://healthunlocked.com/cllsupport/posts/150224196/canadian-scig-and-
ivig
-study https://www.uptodate.com/contents/intravenous-immune-globulin-
ivig
-beyond-the-basics https://healthunlocked.com/cllsupport/posts/private/133873829/my-first-
ivig
-infusion-antibodies-transplant-experience
Ontario study showing benefits https://healthunlocked.com/cllsupport/posts/150224196/canadian-scig-and-
ivig
-study https://www.uptodate.com/contents/intravenous-immune-globulin-
ivig
-beyond-the-basics https://healthunlocked.com/cllsupport/posts/private/133873829/my-first-
ivig
-infusion-antibodies-transplant-experience
AussieNeil
Partner
in
CLL Support
5 years ago
Lead Legs
I suffer from Cerebella Atrophy and I’m due for some treatment shortly, hopefully it will slow things down (
IVIg
). Stay safe and take care. Jacqui
I suffer from Cerebella Atrophy and I’m due for some treatment shortly, hopefully it will slow things down (
IVIg
). Stay safe and take care. Jacqui
Jacqui-A
in
Ataxia UK
5 years ago
Newbie here.
I also receive monthly
IVIG
fir CVID. Was started on Plaquinil yesterday. How long does it take for Plaquinil to start working?
I also receive monthly
IVIG
fir CVID. Was started on Plaquinil yesterday. How long does it take for Plaquinil to start working?
Aleish
in
LUPUS UK
5 years ago
Not “sick” enough for an IVIG treatment...
I had an
IVIG
treatment a few years ago (different oncologist) and although I had a significant reaction, once I got past it, those were the best 6 weeks of my life (post CLL diagnosis). Should I seek out another oncologist for a second opinion?
I had an
IVIG
treatment a few years ago (different oncologist) and although I had a significant reaction, once I got past it, those were the best 6 weeks of my life (post CLL diagnosis). Should I seek out another oncologist for a second opinion?
teb0513
in
CLL Support
5 years ago
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