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-   -   Medication choice (https://www.neurotalk.org/peripheral-neuropathy/114191-medication-choice.html)

pino10 02-08-2010 10:38 PM

Medication choice
 
next week I have a choice of either having IVIg or Plasma Transfer for Peripheral Neuropathy (possible CIDP). I'm 78 in good health ortherwise and of course I'm considering the best possible decision to make. Which is the safest procedure with the highest therapeutic returns. The reason for the choices is that in my home town the neurologist at the hospital is offering IVig while the neurologist I saw at W. Cornell in New York is holding out for Plasma Transfer or Plasmapheresis. I would greatly apprecite anyone's experiences with these drugs and any suggestions they might make. Thank you. :hug:

amy rose 02-09-2010 12:29 AM

I had plasmapherisis and unfortunately it didn't help. My schedule was 3 times a week, once a month, for three months. I have wondered if that is the schedule for most people. It amounted to 9 treatments in 3 months. My neurologist never recommended IVIg. I have anti mag neuropathy.

mrsD 02-09-2010 05:47 AM

IVIG has risks for the elderly.

This article explains it:
http://journals.lww.com/neurotodayon..._Raise.11.aspx
It gives the screening process that doctors should use.

IVIG also tends to cost more.

I agree it is a tough decision.

cyclelops 02-09-2010 10:07 AM

IVIG is a blood product, not a drug, exactly. It contains antibodies from up to 10,000 people. Infusion takes anywhere from 2 and a half hours to 8 hours depending on your tolerance. Some people have reactions or feel funky for a few days. It is very expensive. Check your insurance. It also contains a lot of protein, which can be hard on kidneys and you must have your kidney function monitored.

I can't comment on plasmapheresis. Haven't had that.

pino10 02-10-2010 03:03 AM

Quote:

Originally Posted by cyclelops (Post 619729)
IVIG is a blood product, not a drug, exactly. It contains antibodies from up to 10,000 people. Infusion takes anywhere from 2 and a half hours to 8 hours depending on your tolerance. Some people have reactions or feel funky for a few days. It is very expensive. Check your insurance. It also contains a lot of protein, which can be hard on kidneys and you must have your kidney function monitored.

I can't comment on plasmapheresis. Haven't had that.

Thanks for the info it's been very helpful. It was very kind of you to answer so quickly. I'm dealing with possible peripheral Gammapathy that requires periodic blood tests as I treat the symptoms of what what is part MG too.

NancyKay 02-12-2010 07:25 PM

Quote:

Originally Posted by amy rose (Post 619621)
I had plasmapherisis and unfortunately it didn't help. My schedule was 3 times a week, once a month, for three months. I have wondered if that is the schedule for most people. It amounted to 9 treatments in 3 months. My neurologist never recommended IVIg. I have anti mag neuropathy.

Hi Amy Rose,
I also have anti-MAG neuropathy. I was diagnosed 8 years ago while living in Iowa. I was started on IVIG and it worked well for 2-3 years. I am now out in Washington State and seeing a neurologist in Seattle. He is recommending plasma pheresis and cyclophosphamide. I am afraid of long term side effects, so I haven't had any treatment for 2 years. Do you have a good neurologist where you are? Any good treatments for you? I am 54 and finding that my balance and hand coordination are getting worse. Last big fall resulted in a broken foot!
Thanks,
Nancy Kay

NancyKay 02-12-2010 07:36 PM

Quote:

Originally Posted by pino10 (Post 619593)
next week I have a choice of either having IVIg or Plasma Transfer for Peripheral Neuropathy (possible CIDP). I'm 78 in good health ortherwise and of course I'm considering the best possible decision to make. Which is the safest procedure with the highest therapeutic returns. The reason for the choices is that in my home town the neurologist at the hospital is offering IVig while the neurologist I saw at W. Cornell in New York is holding out for Plasma Transfer or Plasmapheresis. I would greatly apprecite anyone's experiences with these drugs and any suggestions they might make. Thank you. :hug:

I received IVIG for several years for anti-MAG neuropathy (similar to CIDP) and had good results. The treatments started out with slow infusions a day or two apart. I was given tylenol and benadryl prior to the infusions (at a hospital outpatient infusion center) which helped prevent allergic reactions, but made me very sleepy. The infusions lasted 2-3 hours. I would feel groggy, thirsty, and somewhat "gassy" afterwards for a couple of hours. I tolerated the treatments well and my insurance paid for them. We were able to spread the treatments out to once every 6 weeks - 2 months. Over 3 years they became less effective in decreasing the neuropathy, so I stopped. You need to have good veins though as the IVIG is rather viscous and can irritate the veins and cause tissue problems if it goes into the tissue instead of the vein.
Good Luck!

Mommyoftwo 02-16-2010 07:36 PM

How did you know that the IVIG was working?
 
How did you know that the IVIG was working? How long did it take?


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