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IVIg users - how long does releif last???

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Unread 04-28-2009, 01:53 AM   #1
mm80
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Hello everyone,

I know everyone may have individual results / releif but was just wondering those of you receiving IVIg how long do you get releif from your usual MG symptoms and how frequently are you receiving IVIg?


Me currently had my first treatment 3 weeks ago and I noticed releif after 2-3 days, but now just under 3 weeks I feel as though my MG symptoms are slowly creeping back, my next treatment is next thursday, and certainly look forward to it.

If IVIg is so good, why is it not so common of a treatment and does anyone know are their any long term side effects to receiving IVIg???


Cheers,

Melissa
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Unread 04-28-2009, 06:17 AM   #2
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IVIG effects usually start after a couple of days and last about 4 weeks when they are effective… (they haven't been for me, I had two series without any effect…).
That treatment is rather expensive as they are prepared from human blood, they have also to be repeated every 5 to 6 weeks to have a permanent effect, that's why, besides their possible medical side effects, they are not favoured by some doctors. Some countries prefer plasmapheresis (about the same cost)
reported to be more effective, (again, they haven't been for me…), the anti-bodies are temporarily removed instead of being counteracted.
Maurice.
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Unread 04-28-2009, 06:46 AM   #3
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Quote:
Originally Posted by mm80 View Post
Hello everyone,

I know everyone may have individual results / releif but was just wondering those of you receiving IVIg how long do you get releif from your usual MG symptoms and how frequently are you receiving IVIg?


Me currently had my first treatment 3 weeks ago and I noticed releif after 2-3 days, but now just under 3 weeks I feel as though my MG symptoms are slowly creeping back, my next treatment is next thursday, and certainly look forward to it.

If IVIg is so good, why is it not so common of a treatment and does anyone know are their any long term side effects to receiving IVIg???


Cheers,

Melissa

IVIG after being started, workes best getting it over & over, as long as you need it, to renew your cells. I one time treatment just fades away
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Unread 04-28-2009, 04:44 PM   #4
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Thumbs up Hi mm80!

I am now on a "management" program to keep my MG @ bay - 1 week a month for several months now.

The FIRST time I had it, I felt it IMMEDIATELY! I am not joking about that! Now when I receive it, it tkes a few days to fully feel the effects - effects that last about 3-4 weeks.

I was told by one of the nurses that IV IG is still considered "experimental" therefore lots of neuro's do not use it. I swear by it though!

I was also told that it can be had on the kidneys - so when you have it done, make sure to drink lots and lots of water!

I get 500 mL for 5 days in a row.......much better than the mega doses that other people get!

Take care and hope this helps!
Erin
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Unread 04-29-2009, 05:42 AM   #5
bvslas1
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Default Ivig

I'v been on IVig for over 9 months. Once a month and the Dr. took me off of it this month Didn't do anything for me. But I guess everyone is different. Good luck. Bev
Quote:
Originally Posted by mm80 View Post
Hello everyone,

I know everyone may have individual results / releif but was just wondering those of you receiving IVIg how long do you get releif from your usual MG symptoms and how frequently are you receiving IVIg?


Me currently had my first treatment 3 weeks ago and I noticed releif after 2-3 days, but now just under 3 weeks I feel as though my MG symptoms are slowly creeping back, my next treatment is next thursday, and certainly look forward to it.

If IVIg is so good, why is it not so common of a treatment and does anyone know are their any long term side effects to receiving IVIg???


Cheers,

Melissa
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Unread 04-29-2009, 07:21 AM   #6
stayathomemom
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Default Erin,

How on earth do you get your insurance company to cover so much IVIG?
I usually need it 3 times a year and getting our insurance company to cover it is extremely difficult!

Jenna
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Unread 04-29-2009, 10:46 AM   #7
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Smile Hi stayathomemom!

Hey there! The first few times I had it, I was in a full blown crisis, so no prob - there.

I guess I just have a neuro that fights like heck to get it for me! I guess the insurance company figures that it is cheaper than time in the ICU - LOL!

We have Humana - what type do you have?

Big hugs!
Erin
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How on earth do you get your insurance company to cover so much IVIG?
I usually need it 3 times a year and getting our insurance company to cover it is extremely difficult!

Jenna
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Unread 04-29-2009, 05:32 PM   #8
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We have Humana - what type do you have?



Erin,
We have Cigna...need I say more?
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Unread 04-29-2009, 06:24 PM   #9
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Default Hey stayathomemom!

I don't know enough to know what type cigna is............sorry. Are they really bad?

Erin
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Erin,
We have Cigna...need I say more?
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Unread 04-30-2009, 06:58 PM   #10
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I am one of the lucky ones that has a severe reaction to it, I have to have IV pred. before I take my treatments. Without the extra ped. I start a fever immediately goes up to 106 & am covered in hives, big ones all over ! High dose pred. keeps it at a do able level, I get a great boost though from it, & it starts to fade 6 weeks.
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