IVIG Question 2

"IVIG" Survey 2003.
Question 2

Question:

What was your worst symptom that convince your doctor to start with the IVIG ? Did it helped to clear the problem, and after how long ?

Name
^Answers

^Moshe ^{I did the IVIG treatment Just to find out if it will be
more efficient than the Plasmapheresis I did at that time. The results
were the same.}

^Jack ^{To be honest I knew nothing about IvIg. When I left
the hospital I felt better than when I went in, but was still stupid about
IvIg.}

^Dennis ^{My throat ,toung,and cheeks closed down shop and dbl vison.
My throat ,toung and cheeks got back to near normal by the 3rd to 4th
week.Didn't do anything for dv.}

^Marianne ^{I get IVIG every 21 days for 3 consecutive days.}

^Carol ^{I had full series every 3 months for about 2 years then
went on "maintenance" 7 years ago}

^Bette ^{Worst symptom - difficulty breathing. Began to help within
a week, and continued for 8-9 months.}

^Myrna ^{Chewing and swallowing, and weak neck.}

^Dusty ^{DID IT WHEN FIRST IN THE HOSPITAL WHEN I DIED. I DID NOT
KNONW ANYTHING ABOUT IT. RESPIRATORY FAULURE DUE TO MG. ALSO HAD DOUBLE
VISION}

^Brian ^{My doctor felt that Plasma pheresis was good as an
"emergency treatment" but it leaves you open to infection
because your immune system is zero, he much preferred the IVIG as a more
effective treatment with less problems which also boosts your immune
system.}

^Ira ^{After crises and three laser attempts to clear the trachea
they started the first series. Not much help since I was still unable to
breath freely. A tracheotomy finally allowed me to breath and then the
IViG began to help}

^Woody ^{My first IVIG was prescribed in October 2001, because even
though I had been taking 3 grams cellcept/day, I was experiencing
increasingly severe chewing/swallowing and slurred speech problems. My
neurologist prescribed 5 days of IVIG treatments, using 400 mls. of a 10%
solution of Gamimmune N, each day. I was advised to drink lots of water
and liquids before during and after the infusions and the infusions were
done very slowly to prevent adverse side effects. (8 hours the first day,
6 hours the second day down to 3 hours the 5th and last day.) I felt
stronger immediately and the speech, chewing and swallowing problems were
gone after the first infusion.}

^Jennifer ^{I had been on a 'downhill crash' for about 10
months. We talked about it and I decided I wanted to try the
treatment first before going on prednisone. The first booster
treatment of 3 single-days didn't really do that much as it was not done
in a row and it was over Christmas so there were other stressors involved!}

^Lou ^{I take Cellcept and was up tp 3 grams a day. At that point
I had a very bad rash all over me. We think if I could have tolerated the
cellcept I would not have needed the IVIG.}

^Sue ^{When I came home after my 6 month crisis they took me off
cytoxin and I gotr worse so I started IVIG's and cellcept.}

^Tina ^{shortness of breath, yes it helped greatly took about 4
days}

^Christine ^{shortness of breath}

^Connie ^{I started IVIG after prednisone alone failed to control my
breathing difficulties and I had my second respiratory flare. It worked
with 1 week and made a tremendous improvement.}

^Cathy ^{worst symptom difficulty breathing and swallowing had
gotten worse in a short period of time..yes it cleared for abt 3 months
but it has note gotten as bad as it was at that point.}

Question 3

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

Question:	What was your worst symptom that convince your doctor to start with the IVIG ? Did it helped to clear the problem, and after how long ?
Name	^Answers
^Moshe	^{I did the IVIG treatment Just to find out if it will be more efficient than the Plasmapheresis I did at that time. The results were the same.}
^Jack	^{To be honest I knew nothing about IvIg. When I left the hospital I felt better than when I went in, but was still stupid about IvIg.}
^Dennis	^{My throat ,toung,and cheeks closed down shop and dbl vison. My throat ,toung and cheeks got back to near normal by the 3rd to 4th week.Didn't do anything for dv.}
^Marianne	^{I get IVIG every 21 days for 3 consecutive days.}
^Carol	^{I had full series every 3 months for about 2 years then went on "maintenance" 7 years ago}
^Bette	^{Worst symptom - difficulty breathing. Began to help within a week, and continued for 8-9 months.}
^Myrna	^{Chewing and swallowing, and weak neck.}
^Dusty	^{DID IT WHEN FIRST IN THE HOSPITAL WHEN I DIED. I DID NOT KNONW ANYTHING ABOUT IT. RESPIRATORY FAULURE DUE TO MG. ALSO HAD DOUBLE VISION}
^Brian	^{My doctor felt that Plasma pheresis was good as an "emergency treatment" but it leaves you open to infection because your immune system is zero, he much preferred the IVIG as a more effective treatment with less problems which also boosts your immune system.}
^Ira	^{After crises and three laser attempts to clear the trachea they started the first series. Not much help since I was still unable to breath freely. A tracheotomy finally allowed me to breath and then the IViG began to help}
^Woody	^{My first IVIG was prescribed in October 2001, because even though I had been taking 3 grams cellcept/day, I was experiencing increasingly severe chewing/swallowing and slurred speech problems. My neurologist prescribed 5 days of IVIG treatments, using 400 mls. of a 10% solution of Gamimmune N, each day. I was advised to drink lots of water and liquids before during and after the infusions and the infusions were done very slowly to prevent adverse side effects. (8 hours the first day, 6 hours the second day down to 3 hours the 5th and last day.) I felt stronger immediately and the speech, chewing and swallowing problems were gone after the first infusion.}
^Jennifer	^{I had been on a 'downhill crash' for about 10 months. We talked about it and I decided I wanted to try the treatment first before going on prednisone. The first booster treatment of 3 single-days didn't really do that much as it was not done in a row and it was over Christmas so there were other stressors involved!}
^Lou	^{I take Cellcept and was up tp 3 grams a day. At that point I had a very bad rash all over me. We think if I could have tolerated the cellcept I would not have needed the IVIG.}
^Sue	^{When I came home after my 6 month crisis they took me off cytoxin and I gotr worse so I started IVIG's and cellcept.}
^Tina	^{shortness of breath, yes it helped greatly took about 4 days}
^Christine	^{shortness of breath}
^Connie	^{I started IVIG after prednisone alone failed to control my breathing difficulties and I had my second respiratory flare. It worked with 1 week and made a tremendous improvement.}
^Cathy	^{worst symptom difficulty breathing and swallowing had gotten worse in a short period of time..yes it cleared for abt 3 months but it has note gotten as bad as it was at that point.}