Plasmapherisis OR IVIG

Since: Aug 08

New Delhi, India

#1 Aug 25, 2008
My dad is detected with Myasthenia Gravis. He's 72 weight 62 kgs. He's been on steroids (Wysonol) & medication (Gravitor) for last 1 month. However, condition has not improved. Doctor has suggested plasmapherisis (INR 2L) or IVIG (INR 4L) treatment. I am confused which one to go for and from where (I reside in delhi). Any direction/suggestions is appreciated.
Thanks. Pallav.
Radha

Ernakulam, India

#2 Dec 15, 2008
My dad has been suffering from myasthenia gravis for past four years. His condition came under controlfor an year but about two months back he developed respiratory distress and he was put on ventilator .The doctors tried to give him plasmapheresis treatment but side effects started with the very first day of treatment.So he was given IVIG treatment and discharged but immediately after a week he again developed respiratory problem and was again put on ventilator. This time steroid treatment was started and it continued for one month.Meanwhile due to lot of flum formation in his chest they have done traceotomy.Today his condition seems bad. Everyday he complains of flum formation, throat irritation, severe headache and respiratory problem.He is 78 years old. Any kind advice will be highly appreciated.
Ri Ri

United States

#3 Jul 12, 2009
mpallav wrote:
My dad is detected with Myasthenia Gravis. He's 72 weight 62 kgs. He's been on steroids (Wysonol) & medication (Gravitor) for last 1 month. However, condition has not improved. Doctor has suggested plasmapherisis (INR 2L) or IVIG (INR 4L) treatment. I am confused which one to go for and from where (I reside in delhi). Any direction/suggestions is appreciated.
Thanks. Pallav.
Hi. My name is Sherri. I'm 30 and have had MG since I was 17. I personally like the plasmapheresis better. It works faster. I'm having the IVIG right now and I don't feel any better. This is my 4th consecutive treatment this week. The plasmapherisis is given in a shorter amount of time(about 1 1/2 hrs) over a course of 5 days and is through a catheter usually positioned in the neck. The IVIG is given more slowly(about 4-8 hours) over the course of 5 days and is injected into the veins. I hope this information is helpful to you.
samiam

Simi Valley, CA

#4 Jul 15, 2009
Ri Ri wrote:
<quoted text> Hi. My name is Sherri. I'm 30 and have had MG since I was 17. I personally like the plasmapheresis better. It works faster. I'm having the IVIG right now and I don't feel any better. This is my 4th consecutive treatment this week. The plasmapherisis is given in a shorter amount of time(about 1 1/2 hrs) over a course of 5 days and is through a catheter usually positioned in the neck. The IVIG is given more slowly(about 4-8 hours) over the course of 5 days and is injected into the veins. I hope this information is helpful to you.
How often do you have treatments? I have only had MG for a year now, was finally diagnosed Sept 2008. I went back to MN to the Mayo Clinic the end of Oct and was put into ICU because my symptoms were so bad. They put me on the IVIG first, and I had a really bad reaction, so they started the plasmapherisis, which I agree with you, is much better, however, they did mine just like dialysis thru IV's in each arm, and would only do it every other day. I then went back in Feb 2009 for the minimally invasive Thymectomy surgery, and am almost off all my meds now. I will be on Cell Cept until I go back for my year check up next April. I guess it's something you have to learn to live with, but I just want to say, I give you credit because if I had to keep going thru what I went thru last year, I couldn't do it.
ri ri

United States

#5 Jul 19, 2009
samiam wrote:
<quoted text> How often do you have treatments? I have only had MG for a year now, was finally diagnosed Sept 2008. I went back to MN to the Mayo Clinic the end of Oct and was put into ICU because my symptoms were so bad. They put me on the IVIG first, and I had a really bad reaction, so they started the plasmapherisis, which I agree with you, is much better, however, they did mine just like dialysis thru IV's in each arm, and would only do it every other day. I then went back in Feb 2009 for the minimally invasive Thymectomy surgery, and am almost off all my meds now. I will be on Cell Cept until I go back for my year check up next April. I guess it's something you have to learn to live with, but I just want to say, I give you credit because if I had to keep going thru what I went thru last year, I couldn't do it.
I never had to get treatments until this past March. Now I get them every time I have an acute attack. Lately that has been like every other week. I never tried cell cept. How does that make you feel? I have only had mestinon and prednisone for my symptoms in the past. I think that I need something else right now. I'm so tired all the time and my limbs feel like something is weighing them down. The worse part is my vision. I can't see well. Has your vision been affected any? You can also chat with me anytime at [email protected] Thanks for your comments.
Sharon

Canada

#6 Jul 26, 2009
Hi I just want to say that I have had phlem for about 3-4 years I was also diagnosed with asthma,
the phlem is particularly bad at night I do have myasthenia gravis it has been properly diagnosed
Last fall I went to emergency with what I felt might be an asthma problem, I am not sure if it was asthma or not but I received ventolin and was sent home with a 50 mg per day for 10 day dose of predisone. It worked like a charm no weezing no phlem. Just a thought. My phlem is building again and I am thinking this may be an answer.
Bela Mukherjee

Hampton, Australia

#7 Aug 26, 2010
YOU MAY GO TO MYASTHENIA GRAVIS ASSOCIATION OF INDIA WEBSITE & VISIT THEIR INDIAN MYASTHENIA COMMUNITY SUPPORT ONLINE GROUP. It was a great help for our family & their guidance was great & prompt.

[email protected] com
http://www.google.com/profiles/Myastheniagrav...
Bela Mukherjee

Hampton, Australia

#8 Aug 26, 2010
YES I AGREE. WE ACCIDENTALLY DISCOVERED A MORE PRACTICAL ADVICE & GUIDANCE RELEVANT TO INDIAN CIRCUMSTANCES.

YOU CAN GO TO MYASTHENIA GRAVIS ASSOCIATION OF INDIA WEBSITE & VISIT THEIR INDIAN MYASTHENIA COMMUNITY SUPPORT ONLINE GROUP. It was a great help and a blessing for our family & their guidance was great & prompt.

http://www.google.com/profiles/Myastheniagrav...

http://groups.google.com.au/group/myasthenia-...

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