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Experiences with
Intravenous immunoglobulin (IVIg)
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Newly diagnosed
I was diagnosed in late September 2018 when I woke up with a bloody mouth and oral sores to find out my platelets were below 1,000.... was hospitalized for 3 days and given high doses of prednisone and
IVIG
treatments.
I was diagnosed in late September 2018 when I woke up with a bloody mouth and oral sores to find out my platelets were below 1,000.... was hospitalized for 3 days and given high doses of prednisone and
IVIG
treatments.
CrowesyITP
in
ITP Support Association
6 years ago
Newbie
I just received my second
ivig
treatment. The first resulted in a trip to the ER because of Charlie horse muscle spasms and migraines. In was getting sick with a virus. I just had my second infusion. The spasms aren't as bad, but I've had a headache for three days.
I just received my second
ivig
treatment. The first resulted in a trip to the ER because of Charlie horse muscle spasms and migraines. In was getting sick with a virus. I just had my second infusion. The spasms aren't as bad, but I've had a headache for three days.
musicteach85
in
CLL Support
6 years ago
I'm new here...
I had an
IVIG
in the hospital and my counts rose to 12,000. I am currently taking N-plate every week and its keeping me out of the danger zone between 30,000-100,000. The N-plate makes my knees hurt and I'm pretty tired all the time.
I had an
IVIG
in the hospital and my counts rose to 12,000. I am currently taking N-plate every week and its keeping me out of the danger zone between 30,000-100,000. The N-plate makes my knees hurt and I'm pretty tired all the time.
gigi15
in
ITP Support Association
6 years ago
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Getting in touch second time not used to emailing!H
I receive
IVIG
has helped but skin like leather.I have no wrinkles because my face is so tight my friends are envious but I say I would like their wrinkles!!My thoughts are with you all xx
I receive
IVIG
has helped but skin like leather.I have no wrinkles because my face is so tight my friends are envious but I say I would like their wrinkles!!My thoughts are with you all xx
Selsey
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Chronic inflammatory demylinating polyneuropathy (CIDP), MS, & autoimmune issues
I have had
IVIG
treatment for six years, but it it ceased being effective. I am now on a Rotuximab protocol infusion every five weeks. I am finding there is no adequate information on the the long term effects of Rotuximab use. It is infused through iv in the port that is placed in my chest.
I have had
IVIG
treatment for six years, but it it ceased being effective. I am now on a Rotuximab protocol infusion every five weeks. I am finding there is no adequate information on the the long term effects of Rotuximab use. It is infused through iv in the port that is placed in my chest.
Julietkellykidwell
in
Healthy Evidence
6 years ago
What is your plan?
"she who must be obeyed" found that a course of
IVIG
to be very helpful. She drives now after having not driven for years. Lesson over, it lasts until we are no longer here, it is chronic.
"she who must be obeyed" found that a course of
IVIG
to be very helpful. She drives now after having not driven for years. Lesson over, it lasts until we are no longer here, it is chronic.
RoyceNewton
in
My MSAA Community
6 years ago
Rare diagnosis
I start
IVIg
treatments next week.
I start
IVIg
treatments next week.
1inamillion
in
Neuropathy Support
6 years ago
Life with ITP with no steroids
My platelets are between 11000 to about 38000 on good days, dealing with fatigue and using
IVIG
with good effects, was able to never take steroids medication up to date and hoping to stay that way!
My platelets are between 11000 to about 38000 on good days, dealing with fatigue and using
IVIG
with good effects, was able to never take steroids medication up to date and hoping to stay that way!
hannaITP
in
ITP Support Association
6 years ago
IVIG Infusions
Because I have had pneumonia 4 times in the last 2 years I will need
IVIG
infusions. I am anxious and afraid. Anyone have experience with this? My first infusion is in 2 weeks. Thanks.
Because I have had pneumonia 4 times in the last 2 years I will need
IVIG
infusions. I am anxious and afraid. Anyone have experience with this? My first infusion is in 2 weeks. Thanks.
bayside64
in
CLL Support
6 years ago
Platelet count raised from 15k to 63k in a week
Since my discharged from hospital last two weeks, my platelet count was 32k after
IVIG
(from 5k), within 5 days dropped to 15k. Today (after 2 weeks) I went to check up again it was 63k! Wow I’m thrilled!
Since my discharged from hospital last two weeks, my platelet count was 32k after
IVIG
(from 5k), within 5 days dropped to 15k. Today (after 2 weeks) I went to check up again it was 63k! Wow I’m thrilled!
Yoyoyeoh
in
ITP Support Association
6 years ago
Curious how many people with ITP were in a third world country just prior to getting ITP?
This Oct 2018 is my 1 year anniversary since
IVIG
! Hooray! I write this in case it helps even on person out there! Good Health to all. Good Luck!
This Oct 2018 is my 1 year anniversary since
IVIG
! Hooray! I write this in case it helps even on person out there! Good Health to all. Good Luck!
CDmom
in
ITP Support Association
6 years ago
ITP - Not Taking Medication - Feedback
I was given
IVIG
plus a platelet transfusion and then my prednisone was increased to 60mg and I started CellCept. Well, this past August I caught a nasty infection that turned into sepsis and had to be hospitalized again and of course my platelets dropped, this time to 18.
I was given
IVIG
plus a platelet transfusion and then my prednisone was increased to 60mg and I started CellCept. Well, this past August I caught a nasty infection that turned into sepsis and had to be hospitalized again and of course my platelets dropped, this time to 18.
Bueller
in
ITP Support Association
6 years ago
Ulcer Preventing Drugs?
So I’m getting
IVIG
over two days each month. This has been enormously beneficial...for three weeks or so. The week prior to my next two infusions? GI ulcers, anal ulcers, and oh so fun vaginal ulcers, too. The doctors are suggesting we add an oral drug into the mix.
So I’m getting
IVIG
over two days each month. This has been enormously beneficial...for three weeks or so. The week prior to my next two infusions? GI ulcers, anal ulcers, and oh so fun vaginal ulcers, too. The doctors are suggesting we add an oral drug into the mix.
NerdyChristina
in
Behçet's UK
6 years ago
Platelets & me
The first two years I made do with short term combinations of corticosteroids and
IVIG
. My ITP always seems to come in spring and go into remission a couple months later. Or so it did until this year.
The first two years I made do with short term combinations of corticosteroids and
IVIG
. My ITP always seems to come in spring and go into remission a couple months later. Or so it did until this year.
conquerator2
in
ITP Support Association
6 years ago
Treatments
Steriods or
IVIG
. Steroids failed us and we are currently laying in the best praying
IVIG
works. I asked my hemo what happens if this doesnt work and she said "then we are going to be extremely worried". Surely there is more treatments out there?
Steriods or
IVIG
. Steroids failed us and we are currently laying in the best praying
IVIG
works. I asked my hemo what happens if this doesnt work and she said "then we are going to be extremely worried". Surely there is more treatments out there?
Shoni89
in
ITP Support Association
6 years ago
Venetoclax and mouth sores
My skin issues did not heal until I started on
IVIG
. As I weaned myself off the steroids my mouth started getting sores. My dermatologist are blaming the Obinutuzumab. These mouth sores are from another autoimmune disorder called Oral Lichen Planus.
My skin issues did not heal until I started on
IVIG
. As I weaned myself off the steroids my mouth started getting sores. My dermatologist are blaming the Obinutuzumab. These mouth sores are from another autoimmune disorder called Oral Lichen Planus.
Eliotf
in
CLL Support
6 years ago
B12 could it be something else/France/injections
Moved to France where b12 protocol is very progressive. was on injections 3x a week. in the meanwhile saw a neurologist who showed peroneal nerve damage in both legs and nerve damage that manifested as carpal tunnel. as I work in Monaco the doctors there started
Ivig
quickly as the b12 did not seem to
Moved to France where b12 protocol is very progressive. was on injections 3x a week. in the meanwhile saw a neurologist who showed peroneal nerve damage in both legs and nerve damage that manifested as carpal tunnel. as I work in Monaco the doctors there started
Ivig
quickly as the b12 did not seem to
lunez22
in
Pernicious Anaemia Society
6 years ago
Chronic itp
any odds she used to hav low platelet counts but that never stopped her from doing anything she was much active than most of the normal platelet count ppl but since last nov she is having blood stools later she is also diagonised with piles she became very very serious she was un ucu she was given
IVIG
any odds she used to hav low platelet counts but that never stopped her from doing anything she was much active than most of the normal platelet count ppl but since last nov she is having blood stools later she is also diagonised with piles she became very very serious she was un ucu she was given
IVIG
sreea_dey90
in
ITP Support Association
6 years ago
IVIG
I just wanted to mention this for patients who may have GI and/or neurological involvement, that we’ve been doing
IVIG
and it’s been helping me improve amazingly. I was without for 8 weeks and drastically deteriorated. I’m just curious if anyone else has done this, and/or plasmapheresis.
I just wanted to mention this for patients who may have GI and/or neurological involvement, that we’ve been doing
IVIG
and it’s been helping me improve amazingly. I was without for 8 weeks and drastically deteriorated. I’m just curious if anyone else has done this, and/or plasmapheresis.
NerdyChristina
in
Behçet's UK
6 years ago
Nplate didn't has any effect
She had treatment with
ivig
and rituximub in the past, and those drugs didn't has complete effect too
She had treatment with
ivig
and rituximub in the past, and those drugs didn't has complete effect too
hamid_80386
in
ITP Support Association
6 years ago
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