IVIG Question 3

"IVIG" Survey 2003.
Question 3

Question:

After the “First Boost” (5 treatments Series). Did you continued with “Maintenance Treatments” and
how often ?

Name
^Answers

^Moshe ^{Yes, every 6 weeks.}

^Jack ^{No. My Neuro in Oregon said it was too expensive to
use on me for treatment. Yet it would have been paid 100% by the VA
or the Military. He replied that ethically and morally it was too
expensive and he would not authorize it. He said it was too scarce
to use for ordinary treat, just emergencies.}

^Dennis ^{Had all 1800 ml over a 9 hour period. 2nd treatment a year
later (2100 ml over 2 x6 hour days)}

^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 ^No.

^Myrna ^{Boost was only 4 treatments, and then once a month for two
months.}

^Dusty ^{I HAD A TREATMENT OF 2DAYS ONLY AFTER OUT OF HSOPITAL
ABOUT 3 MONTHS. AND ANOTHER 2 DAYS AFTER ANOTHER 3 MONTHS. I WAS BREATHING
BAD AGAIN BY THEN. NEVER HAVE FIGURED OUT WHY ONLY 2 DAYS. WENT TO A NEW
NEURO. ALMOST 2 YEARS AFTER DX. AND HAD A 5 DAY IVIG THANKSGIVING TIME (
ENDO F NOVEM. 92) JUST FINISHED ANOTHER 5 DAY WITH THIS DOC. END OF
JANUARY 03.}

^Brian ^{It varies, mostly twice a year to "boost" the
system, but sometimes necessary if my system is "run down"
because of illness.}

^Ira ^{Maintenance treatments evry six weeks after that thru
to the present.}

^Woody
After the first IVIG series in October 2001, I remained symptom free for about 3 months. Then the symptoms returned, transiently, and I tried to prevent them with mestinon timespan, using ½ tablet about an hour before meals and increasing to 1 to 2 timespans/day. Because the symptoms were recurring more frequently, my neurologist added 125 mg. cyclosporine, twice daily, in February 2002. In June 2002, I stopped taking the timespan, completely, because I noticed I was getting muscle cramps, especially at night, whenever I too the timespan. During the summer of 2002, I was experiencing increasing incidents of the symptoms and my doctor prescribed another series of IVIG infusions in August 2002. I had it done in our local hospital's infusion center. My Dr. again prescribed Gamimmune N IVIG, specifying "no substitutions", because the local hospital routinely used Gammagard brand IVIG.
This second series also lasted about 3 months before the symptoms returned. I was having slurred speech the morning I received my first infusion and it cleared up within an hour of the start of the infusion. My neurologist had told me it would take several weeks before I felt the full benefits of the infusions, but each time my symptoms cleared up with the first infusion. The second series of IVIGs also lasted about 3 months before the symptoms returned. My doctor then prescribed a third series of IVIGs, which I just received, 5 months after the previous series. She said that since each time, the full benefits lasted about 3 months, henceforth, she would prescribed "booster" IVIGs every 3 months.

^Jennifer ^{Well, I ended up on the prednisone anyway and then started
a maintenance IVIG approx. every 4-5 weeks. After maybe 3
treatments, I found it was better for me to get them @ 3-week
intervals. Just this past week, it was decided that I would do an
every-other week schedule for the next 6 weeks to help me get through a
very busy time at work. I go for a single-day dose at the HIGH SPEED of
100/ml.........long day at the hospital for me (7.5 hrs usually).}

^Lou ^No.

^Sue ^{yes. at first 5 days per month then switched to 2 days
every ther week.}

^Tina ^{I tried one booster treatment about 6wks later, and that
didnt seem to help, so we tried another 3 day course a couple weeks later,
and again in about 3 months.}

^Christine ^{I was unable to continue treatments because of aseptic
meningitis}

^Connie ^{My first "boost" was 3 consecutive days of
63grams daily. Since then I have received 63grams every 2
weeks. We tried to increase to every 3 weeks but found that was too
long and went back to every 2. On CellCept now and hoping to be able
to space the IVIG treatments further apart soon.}

^Cathy ^{no maintenance, had thymectomy aug 2002}

Question 4

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

Question:	After the “First Boost” (5 treatments Series). Did you continued with “Maintenance Treatments” and how often ?
Name	^Answers
^Moshe	^{Yes, every 6 weeks.}
^Jack	^{No. My Neuro in Oregon said it was too expensive to use on me for treatment. Yet it would have been paid 100% by the VA or the Military. He replied that ethically and morally it was too expensive and he would not authorize it. He said it was too scarce to use for ordinary treat, just emergencies.}
^Dennis	^{Had all 1800 ml over a 9 hour period. 2nd treatment a year later (2100 ml over 2 x6 hour days)}
^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	^No.
^Myrna	^{Boost was only 4 treatments, and then once a month for two months.}
^Dusty	^{I HAD A TREATMENT OF 2DAYS ONLY AFTER OUT OF HSOPITAL ABOUT 3 MONTHS. AND ANOTHER 2 DAYS AFTER ANOTHER 3 MONTHS. I WAS BREATHING BAD AGAIN BY THEN. NEVER HAVE FIGURED OUT WHY ONLY 2 DAYS. WENT TO A NEW NEURO. ALMOST 2 YEARS AFTER DX. AND HAD A 5 DAY IVIG THANKSGIVING TIME ( ENDO F NOVEM. 92) JUST FINISHED ANOTHER 5 DAY WITH THIS DOC. END OF JANUARY 03.}
^Brian	^{It varies, mostly twice a year to "boost" the system, but sometimes necessary if my system is "run down" because of illness.}
^Ira	^{Maintenance treatments evry six weeks after that thru to the present.}
^Woody	After the first IVIG series in October 2001, I remained symptom free for about 3 months. Then the symptoms returned, transiently, and I tried to prevent them with mestinon timespan, using ½ tablet about an hour before meals and increasing to 1 to 2 timespans/day. Because the symptoms were recurring more frequently, my neurologist added 125 mg. cyclosporine, twice daily, in February 2002. In June 2002, I stopped taking the timespan, completely, because I noticed I was getting muscle cramps, especially at night, whenever I too the timespan. During the summer of 2002, I was experiencing increasing incidents of the symptoms and my doctor prescribed another series of IVIG infusions in August 2002. I had it done in our local hospital's infusion center. My Dr. again prescribed Gamimmune N IVIG, specifying "no substitutions", because the local hospital routinely used Gammagard brand IVIG. This second series also lasted about 3 months before the symptoms returned. I was having slurred speech the morning I received my first infusion and it cleared up within an hour of the start of the infusion. My neurologist had told me it would take several weeks before I felt the full benefits of the infusions, but each time my symptoms cleared up with the first infusion. The second series of IVIGs also lasted about 3 months before the symptoms returned. My doctor then prescribed a third series of IVIGs, which I just received, 5 months after the previous series. She said that since each time, the full benefits lasted about 3 months, henceforth, she would prescribed "booster" IVIGs every 3 months.
^Jennifer	^{Well, I ended up on the prednisone anyway and then started a maintenance IVIG approx. every 4-5 weeks. After maybe 3 treatments, I found it was better for me to get them @ 3-week intervals. Just this past week, it was decided that I would do an every-other week schedule for the next 6 weeks to help me get through a very busy time at work. I go for a single-day dose at the HIGH SPEED of 100/ml.........long day at the hospital for me (7.5 hrs usually).}
^Lou	^No.
^Sue	^{yes. at first 5 days per month then switched to 2 days every ther week.}
^Tina	^{I tried one booster treatment about 6wks later, and that didnt seem to help, so we tried another 3 day course a couple weeks later, and again in about 3 months.}
^Christine	^{I was unable to continue treatments because of aseptic meningitis}
^Connie	^{My first "boost" was 3 consecutive days of 63grams daily. Since then I have received 63grams every 2 weeks. We tried to increase to every 3 weeks but found that was too long and went back to every 2. On CellCept now and hoping to be able to space the IVIG treatments further apart soon.}
^Cathy	^{no maintenance, had thymectomy aug 2002}