advertisement
Reply
 
Thread Tools Display Modes
Old 02-08-2010, 10:38 PM #1
pino10 pino10 is offline
Junior Member
 
Join Date: Dec 2009
Location: Pennsylvania
Posts: 11
10 yr Member
pino10 pino10 is offline
Junior Member
 
Join Date: Dec 2009
Location: Pennsylvania
Posts: 11
10 yr Member
Post 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.
pino10 is offline   Reply With QuoteReply With Quote

advertisement
Old 02-09-2010, 12:29 AM #2
amy rose amy rose is offline
Junior Member
 
Join Date: Jan 2010
Posts: 6
10 yr Member
amy rose amy rose is offline
Junior Member
 
Join Date: Jan 2010
Posts: 6
10 yr Member
Default

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.
amy rose is offline   Reply With QuoteReply With Quote
Old 02-09-2010, 05:47 AM #3
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

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.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
Old 02-09-2010, 10:07 AM #4
cyclelops's Avatar
cyclelops cyclelops is offline
Magnate
 
Join Date: May 2007
Posts: 2,049
15 yr Member
cyclelops cyclelops is offline
Magnate
cyclelops's Avatar
 
Join Date: May 2007
Posts: 2,049
15 yr Member
Default

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.
__________________
Some days are not so good
.

.


Others not so bad:
.
cyclelops is offline   Reply With QuoteReply With Quote
Old 02-10-2010, 03:03 AM #5
pino10 pino10 is offline
Junior Member
 
Join Date: Dec 2009
Location: Pennsylvania
Posts: 11
10 yr Member
pino10 pino10 is offline
Junior Member
 
Join Date: Dec 2009
Location: Pennsylvania
Posts: 11
10 yr Member
Post

Quote:
Originally Posted by cyclelops View Post
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.
pino10 is offline   Reply With QuoteReply With Quote
Old 02-12-2010, 07:25 PM #6
NancyKay NancyKay is offline
Junior Member
 
Join Date: Feb 2008
Location: Lummi Island, WA
Posts: 41
15 yr Member
NancyKay NancyKay is offline
Junior Member
 
Join Date: Feb 2008
Location: Lummi Island, WA
Posts: 41
15 yr Member
Default

Quote:
Originally Posted by amy rose View Post
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 is offline   Reply With QuoteReply With Quote
Old 02-12-2010, 07:36 PM #7
NancyKay NancyKay is offline
Junior Member
 
Join Date: Feb 2008
Location: Lummi Island, WA
Posts: 41
15 yr Member
NancyKay NancyKay is offline
Junior Member
 
Join Date: Feb 2008
Location: Lummi Island, WA
Posts: 41
15 yr Member
Default

Quote:
Originally Posted by pino10 View Post
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.
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!
NancyKay is offline   Reply With QuoteReply With Quote
Old 02-16-2010, 07:36 PM #8
Mommyoftwo Mommyoftwo is offline
Junior Member
 
Join Date: Sep 2009
Location: Lake Orion, Michigan
Posts: 10
10 yr Member
Mommyoftwo Mommyoftwo is offline
Junior Member
 
Join Date: Sep 2009
Location: Lake Orion, Michigan
Posts: 10
10 yr Member
Default How did you know that the IVIG was working?

How did you know that the IVIG was working? How long did it take?
Mommyoftwo is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Modified duty, any choice in this? diaba Layoffs, Unemployment and Worker's Compensation 2 06-20-2008 01:12 PM
The Challenge And Choice Method For buckwheat Reflex Sympathetic Dystrophy (RSD and CRPS) 0 03-25-2007 04:41 PM
Is There A Choice? Visitor Creative Corner 5 03-14-2007 03:37 PM


All times are GMT -5. The time now is 01:01 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.