IVIG Page 8

"IVIG" Survey 2003.
Question 8

Question:

How long do you have MG, and at what point of time did you start with IVIG ? Is it effective all the time the same or at some point of time it didn’t help no more ?

Name
^Answers

^Moshe ^{I have MG (Ocular) since 1998. The IVIG was my third
choice of option after Mestinon and Plasmapheresis. I stop it and
continued with the Plasmapheresis until I felt that I didn’t need it any
more and stop it all. (Im in remission from July 2000).}

^Jack ^{I accuried MG in Oct of 1999. My first crisis was in
Dec and they used IvIg while I was in a coma. Can not speak for the
first time. They started IvIg in Aug 02 with 5 treatments of 34
grams each at 10%. Felt wonderful after the first treatment. In Oct
I received 160 grams in two bottles as an emergency treatment while
hospitalized. Did wonders for me. Received 68 grams in one borttle
lupon release from the hospital. Did not do much at all. Was
very weak. A week later they gave me 40 grams, the last the hospital
had on hand, and it did not do much for me.
In Nov I started on a 3 week program. 68 grams each
in 10% solution. The lfirst one did nothing, and after the second I
began to feel better. The first time I received IvIg after my Thymus
operation it took several days to kick it. It has been that way the
last two time. I am still recovering from the operation so I hop[e I
will received more benefit from the IvIg as I go along. Yesterday
the Dr. said it wouold ltake about 2 more mopnths for me to really
recover.}

^Dennis ^{Within the first month of obvious symptoms . So far seems
to be effective.}

^Marianne ^{Have has MG for 1 year. Started IVIG 3 months after
diagnosis. It is effective most times.}

^Carol ^{Have had MG for 11 years, Started IVIG after 2 years
when plasmapheresis stopped working and I had reactions to the
pheresis. Its effective for me all the time. I did have a refractory
response to the IVIG once so we waited a little longer before next
infusion. Benn on IVIG a total of 9 years, last five years having it
every other week. I do 40grams every other week.}

^Bette ^{Diagnosed with MG in 1995, had first IVIg in 1996.}

^Myrna ^{Was DX'ed Jan 2002. IVIg in May 2002 It
really never helped. until , after going to a new Neuro. he increased the
Gamimune from 40 mg to 70mg's , and every two weeks.}

^Dusty ^{WAS DX. JUNE O1 WHEN I CROAKED IN ICU. THEY FEEL I HAD IT
W FOR A FEW YEARS THO WITHOU T KNOWING. DIDNT GO TO A DOC
UNTIL I HAD COU DOULBE VISION. WHO KNEW//
THEN CRASHED IN ABOAUT 3 DAYS AND DYED AND THEN ALL THE OTHER SYMPTOMS
STARTED. AND HAVE NEVER LEFT. ALMOST AS THO I DIDNT HAVE IT BEFORE THEY
TREATED ME FOR IT. GRRRRR}

^Brian ^{After 12 years I have been receiving IVIG for 10years now
and regard it as a highly effective treatment in my own case.}

^Ira ^{Dx-ed 1991----IViG since July 1999}

^Woody ^{My MG became exacerbated in December 1998 and I was dx'd
with it in January 1999, when blood tests came back positive for the ACHR
Antibodies. Ii didn't receive my first IVIGs until October 2001 and it
helped immediately, as did those I received in August 2002 and January
2003.}

^Jennifer ^{I've had MG for 16+ years now and only started using IVIG
at year 15. Last couple of years have been in flare-up for some
reason. Other years have been very well-maintained on Mestinon 60
mgs tabs alone. I've had a couple of infusions that weren't that
helpful but I think that it could be because I wasn't feeling well to
begin with (had slight pneumonia) or that I just wasn't getting enough
rest due to my long, self-imposed, workdays (12 hrs).}

^Lou ^{It has been 14 years since diagnosis. Every time I have
had it is is.}

^Sue ^{dx 4 years. sometimes more than others.}

^Tina ^{I used ivig only about 4 months after diagnosis. It was in
response to the shortness of breath and exhaustion trigered by
recent prednisone start up. (the "get better before you get
worse" syndrome) subsequent treatment did not seem to help
enough to warent continued treatments. My doc said that happens with some
people.}

^Christine ^{I was diagnosed less than one year}

^Connie ^{! I was diagnosed in June 2001 and started IVIG in July of
2002. I find that it works equally every time except one time when I had a
viral infection. That particular time I didn't "feel" much
improvement but I am certain that the ivig is what kept me from
respiratory complications and hospitalization from the viral infection.}

^Cathy ^{diagnosed in march 2002, i had been see gp, after my 4th
trip back to gp i was told she was only a pa and i would be seeing the
head DOCTOR from then on. he suspected mg and sent me to neuroligist. my
symptoms had been showing since aug 2002, had ivig may 2002.}

Question 9

Page designed by Terry Riley
http://myasthenia.puhs.org/
Sunday, March 05, 2006

Question:	How long do you have MG, and at what point of time did you start with IVIG ? Is it effective all the time the same or at some point of time it didn’t help no more ?
Name	^Answers
^Moshe	^{I have MG (Ocular) since 1998. The IVIG was my third choice of option after Mestinon and Plasmapheresis. I stop it and continued with the Plasmapheresis until I felt that I didn’t need it any more and stop it all. (Im in remission from July 2000).}
^Jack	^{I accuried MG in Oct of 1999. My first crisis was in Dec and they used IvIg while I was in a coma. Can not speak for the first time. They started IvIg in Aug 02 with 5 treatments of 34 grams each at 10%. Felt wonderful after the first treatment. In Oct I received 160 grams in two bottles as an emergency treatment while hospitalized. Did wonders for me. Received 68 grams in one borttle lupon release from the hospital. Did not do much at all. Was very weak. A week later they gave me 40 grams, the last the hospital had on hand, and it did not do much for me. In Nov I started on a 3 week program. 68 grams each in 10% solution. The lfirst one did nothing, and after the second I began to feel better. The first time I received IvIg after my Thymus operation it took several days to kick it. It has been that way the last two time. I am still recovering from the operation so I hop[e I will received more benefit from the IvIg as I go along. Yesterday the Dr. said it wouold ltake about 2 more mopnths for me to really recover.}
^Dennis	^{Within the first month of obvious symptoms . So far seems to be effective.}
^Marianne	^{Have has MG for 1 year. Started IVIG 3 months after diagnosis. It is effective most times.}
^Carol	^{Have had MG for 11 years, Started IVIG after 2 years when plasmapheresis stopped working and I had reactions to the pheresis. Its effective for me all the time. I did have a refractory response to the IVIG once so we waited a little longer before next infusion. Benn on IVIG a total of 9 years, last five years having it every other week. I do 40grams every other week.}
^Bette	^{Diagnosed with MG in 1995, had first IVIg in 1996.}
^Myrna	^{Was DX'ed Jan 2002. IVIg in May 2002 It really never helped. until , after going to a new Neuro. he increased the Gamimune from 40 mg to 70mg's , and every two weeks.}
^Dusty	^{WAS DX. JUNE O1 WHEN I CROAKED IN ICU. THEY FEEL I HAD IT W FOR A FEW YEARS THO WITHOU T KNOWING. DIDNT GO TO A DOC UNTIL I HAD COU DOULBE VISION. WHO KNEW// THEN CRASHED IN ABOAUT 3 DAYS AND DYED AND THEN ALL THE OTHER SYMPTOMS STARTED. AND HAVE NEVER LEFT. ALMOST AS THO I DIDNT HAVE IT BEFORE THEY TREATED ME FOR IT. GRRRRR}
^Brian	^{After 12 years I have been receiving IVIG for 10years now and regard it as a highly effective treatment in my own case.}
^Ira	^{Dx-ed 1991----IViG since July 1999}
^Woody	^{My MG became exacerbated in December 1998 and I was dx'd with it in January 1999, when blood tests came back positive for the ACHR Antibodies. Ii didn't receive my first IVIGs until October 2001 and it helped immediately, as did those I received in August 2002 and January 2003.}
^Jennifer	^{I've had MG for 16+ years now and only started using IVIG at year 15. Last couple of years have been in flare-up for some reason. Other years have been very well-maintained on Mestinon 60 mgs tabs alone. I've had a couple of infusions that weren't that helpful but I think that it could be because I wasn't feeling well to begin with (had slight pneumonia) or that I just wasn't getting enough rest due to my long, self-imposed, workdays (12 hrs).}
^Lou	^{It has been 14 years since diagnosis. Every time I have had it is is.}
^Sue	^{dx 4 years. sometimes more than others.}
^Tina	^{I used ivig only about 4 months after diagnosis. It was in response to the shortness of breath and exhaustion trigered by recent prednisone start up. (the "get better before you get worse" syndrome) subsequent treatment did not seem to help enough to warent continued treatments. My doc said that happens with some people.}
^Christine	^{I was diagnosed less than one year}
^Connie	^{! I was diagnosed in June 2001 and started IVIG in July of 2002. I find that it works equally every time except one time when I had a viral infection. That particular time I didn't "feel" much improvement but I am certain that the ivig is what kept me from respiratory complications and hospitalization from the viral infection.}
^Cathy	^{diagnosed in march 2002, i had been see gp, after my 4th trip back to gp i was told she was only a pa and i would be seeing the head DOCTOR from then on. he suspected mg and sent me to neuroligist. my symptoms had been showing since aug 2002, had ivig may 2002.}