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Posted: Fri Jan 13, 2012 8:06 am
by bspotts1
Searching....for anyone with any experience taking IVIG - intravenous immunoglobulin. It's a blood product extracted from the plasma of donors and administered intravenously as a plasma protein replacement therapy for immune deifcient patients. It's FDA approved but not specifically for MS. It has been suggested as a possible therapy for my wife who is 2 1/2 years dx PPMS. AV & COP have been of no help.

Any experiences out there???

Brad in Sarasota


Posted: Fri Jan 13, 2012 11:43 am
by 1eye

Hope you don't mind, Brad, I am posting this reply as a topic on the CCSVI forum.

No, I have no personal experience with it. I read a diary on the Internet somewhere probably about 10 years ago and it didn't seem to be doing him any good. I am no expert but I think it is ineffective, though it is used in another demyelinating disease, Guillain-Barre syndrome, and this is perhaps why it is thought it may be of use in "MS", plus that multiple blood transfusions have also been useful in treating early "MS", which is still thought by diehards to be *only* autoimmune. Maybe early "MS" might respond to it the same way, because they are both products of CCSVI and both respond to clean blood, that has never passed through a person with CCSVI. Maybe with a transfusion you get some of the donor's vein-angiogenic stem cells, or maybe there is an immune problem caused by CCSVI in both cases that can be treated early with blood transfusions. This is from Wikipedia:

There is no cure for Guillain-Barre syndrome. However, many treatments are available to help reduce symptoms, treat complications, and speed up recovery.

When symptoms are severe, the patient will need to go to the hospital for treatment, which may include artificial breathing support.

In the early stages of the illness, treatments that remove or block the proteins that attack the nerve cells, called antibodies, may reduce the severity and duration of Guillain-Barre symptoms.

One method is called plasmapheresis, and it is used to remove the antibodies from the blood. The process involves taking blood from the body, usually from the arm, pumping it into a machine that removes the antibodies, and then sending it back into the body.

A second method is to block the antibodies using high-dose immunoglobulin therapy (IVIG). In this case, the immunoglobulins are added to the blood in large quantities, blocking the antibodies that cause inflammation.

Other treatments are directed at preventing complications.

Blood thinners may be used to prevent blood clots.

If the diaphragm is weak, breathing support or even a breathing tube and ventilator may be needed.

Pain is treated with anti-inflammatory medicines and narcotics, if needed.

Proper body positioning or a feeding tube may be used to prevent choking during feeding if the muscles used for swallowing are weak.
A friend of mine, not quite as old as I but only by a few years, had a son with Guillain-Barre syndrome. It was treated early this way (immediately after an early diagnosis), and seems to have made a complete recovery, though the one school he was about to enter when he was diagnosed, changed their minds while he was laid up. It moved very quickly, compared to "MS". He was in pretty bad shape. His mom used to be overweight, but has lost all the excess, and now goes to the gym all the time (her husband is a trainer). She was scared because she had had incidents that were thought to be possibly MS.

I think both may be variants of CCSVI, and that both may respond if treated early this way. The reason I think so is that remember when he was a baby, 20 years ago, and he had a problem that involved a very stiff neck that made you think he was deformed. However, this was not immediately after he was born I don't think I don't think they ever got to the bottom of that, it resolving spontaneously..

I am going to tell him and his mother, if he ever has a relapse, he should get the angioplasty.

I think you are on the right forum and topic, General Mediacations->IVIG.

From the line of asterisk this is an addition:

I am appending this so as not to cause confusion: re-reading the above I realize now that transfusions are not the same as plasmapheresis. Antibodies are likely involved in GBS. The treatment has worked for him, because the young man is very well now, maybe not as athletic, but a fairly normal 20 year old.

I ain't no doctor, see?


Posted: Fri Jan 13, 2012 6:10 pm
by lyndacarol
1eye-- From your quoted material:
One method is called plasmapheresis, and it is used to remove the antibodies from the blood. The process involves taking blood from the body, usually from the arm, pumping it into a machine that removes the antibodies, and then sending it back into the body.
I wish to add that plasmapheresis removes more than just antibodies from the blood; I know that it removes calcium; I suspect it removes insulin also.

Plasmapheresis (a.k.a. plasma exchange) is used in MS patients who fail to respond to traditional treatments.


Posted: Sat Jan 14, 2012 5:54 pm
by kirsten
Hi Brad
I was on IVIG treatment for 16 months. I just finish my last treatment in December. The first month I had 5
straight days of treatment. For the first week after that I was really sick on my stomach couldn't eat and I had
migraines. Every month after my treatment I would still get queasy and maybe have a headache. It last for couple of days. The treatment improve my energy level and I haven't had any new flares. Overall its worth it if you can
tolerate being sick couple days a month.



Posted: Sun Jan 15, 2012 9:12 am
by LR1234
I have been ok'd to have IVIg treatment and am thinking about starting it next month.
Glad to hear it worked for you Kirsten


Posted: Tue Jan 17, 2012 9:14 am
by bspotts1
Thanks Kirsten for sharing your experience. My wife is the ms'er in the family and she has not yet been approved to start the infusion...just thought I'd put some feelers out there to try to get some first-hand information. I understand it's VERY expensive so getting approval might prove problematic. Haven't really found much information out there since treatment for MS with IVIG is an off-label use. Our new neuro @ USF in Tampa has had some success with it and some who have had no response...pretty much typical of all the meds out there. I'm glad to hear it has helped with your energy / fatigue and that you have had no relapses. My wife is PPMS so relapses are not an issue. Have you experienced any other symptom relief???

Thanks for your response