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Old 07-05-2007, 07:30 PM #1
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Default I had my first IVIG infusion today..........

I think the infusion went quite well. It lasted for 4 1/2 hrs because they put it in slowly today to see how I would react. They put the Benedryl in first (they thought I'd get really tired but I didn't) so I was awake for the whole thing. I didn't have any side effects.....at least not yet anyway. So I'm very happy about that!
For those of you getting IVIG, they used Octagam today 40g/800mil over 4 1/2 hrs. My husband went with me and stayed for the first 2 hrs and then had to head to work, but then my friend came and stayed the rest of the time and drove me home.
I'm tired now but think it was just a very stressful day catching up to me. I'm drinking my water and will continue to do so.
They ordered Subway sandwiches, chips and drinks for all of us IV'ers, that was nice. My dr. told me that the IVIG cost $3,000 for each infusion, but when I signed the paperwork today it says the IVIG costs $10,670! Man that stuff is pure gold! I'm sure they don't get that much from the insurance company.....but still.....that stuff is expensive!
Anyway.....I have my next appt. next Thurs. Thanks for all your info and suggestions...I sure appreciated them today! Roxie
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Dx'd with Spinal Arthritis 09
Upper and lower Spinal Cord Stimulator surgery
Replaced IV port 09
Had surgery for IV port for IVIG infusions 07
Halo 360 & 90 procedure for Barrett's esophagus
Dx'd Chronic Axonal Neuropathy & Myopathy June 07
Dx'd IC May 2006 (after suffering for 25+ yrs!)
Gall bladder surgery Aug. 2004
Gastric Bypass Dec. 2004
Dx'd: Barrett's Esphogus July 2004
Bladder surgery 2000
Dx'd: IBS 2000
Hysterectomy (fibroids) 1999
Laminectomy 1989
Dx'd: Degerative Disk Disease 1989
Cyst removed from my ankle -twice 1986
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Old 07-05-2007, 07:44 PM #2
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Default Thanks and good news

Roxie,
I was just thinking about you and wondering how it went. I can't believe you haven't passed out from the benedryl. I'm just so glad you are able to have this stuff and that you are tolerating it so well. This is good news indeed!

Keep us updated on how you are feeling.

Billye
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Old 07-05-2007, 07:47 PM #3
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HI Billye!
I'm happy too with the ease of today.
As for the Benedryl.....meds have different reactions on me than 'normal' people, for some reason. Things that knock others out keep me awake! Very strange! It's always been that way. Roxie
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Dx'd with Spinal Arthritis 09
Upper and lower Spinal Cord Stimulator surgery
Replaced IV port 09
Had surgery for IV port for IVIG infusions 07
Halo 360 & 90 procedure for Barrett's esophagus
Dx'd Chronic Axonal Neuropathy & Myopathy June 07
Dx'd IC May 2006 (after suffering for 25+ yrs!)
Gall bladder surgery Aug. 2004
Gastric Bypass Dec. 2004
Dx'd: Barrett's Esphogus July 2004
Bladder surgery 2000
Dx'd: IBS 2000
Hysterectomy (fibroids) 1999
Laminectomy 1989
Dx'd: Degerative Disk Disease 1989
Cyst removed from my ankle -twice 1986
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Old 07-05-2007, 08:24 PM #4
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Hoo Roxie.

Good going!!!! You lived!!!!! lol

I knew you would breeze through it. So now you know what IVIG is.

Be well.

Melody
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Old 07-05-2007, 08:29 PM #5
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HI Mel!
Yep I made it! Thank Goodness! I'm SO glad I didn't have any of the side effects!
There was a lady getting an infusion the same time I did that's been getting them since 1999!! She's now only having to take them once every 3 weeks......but still....that's one HECK of a long time!
How long has Alan been taking them??? Roxie
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Dx'd with Spinal Arthritis 09
Upper and lower Spinal Cord Stimulator surgery
Replaced IV port 09
Had surgery for IV port for IVIG infusions 07
Halo 360 & 90 procedure for Barrett's esophagus
Dx'd Chronic Axonal Neuropathy & Myopathy June 07
Dx'd IC May 2006 (after suffering for 25+ yrs!)
Gall bladder surgery Aug. 2004
Gastric Bypass Dec. 2004
Dx'd: Barrett's Esphogus July 2004
Bladder surgery 2000
Dx'd: IBS 2000
Hysterectomy (fibroids) 1999
Laminectomy 1989
Dx'd: Degerative Disk Disease 1989
Cyst removed from my ankle -twice 1986
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Old 07-05-2007, 08:30 PM #6
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Default Infusions are what I call

a HAPPY BOREDOM! Yes it's tedious but, in the long term when you respond, to it, you will feel ever so MUCH better!

Sounds like you at least got something GOOD to eat! That makes a difference in it all.

Get some rest now, process the whole thing and let those little IG 'nanobots' go to work.

s - j
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Old 07-05-2007, 08:33 PM #7
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HI J,
I tried to lay down to rest when I got home but couldn't sleep......so just vegging out in front of the computer now....but will veg tomorrow too. I hope those expensive nanobots do their thing for me! Roxie
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Dx'd with Spinal Arthritis 09
Upper and lower Spinal Cord Stimulator surgery
Replaced IV port 09
Had surgery for IV port for IVIG infusions 07
Halo 360 & 90 procedure for Barrett's esophagus
Dx'd Chronic Axonal Neuropathy & Myopathy June 07
Dx'd IC May 2006 (after suffering for 25+ yrs!)
Gall bladder surgery Aug. 2004
Gastric Bypass Dec. 2004
Dx'd: Barrett's Esphogus July 2004
Bladder surgery 2000
Dx'd: IBS 2000
Hysterectomy (fibroids) 1999
Laminectomy 1989
Dx'd: Degerative Disk Disease 1989
Cyst removed from my ankle -twice 1986
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Old 07-05-2007, 09:27 PM #8
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Default Roxie

Your on a went good high i'm the same way about things,i'm so glad.
Sue
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Old 07-05-2007, 09:34 PM #9
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Does your Neuropathy pain get worse when it rains?? Mine seems too......we've been getting all that rain......and now I ache like crazy! UGH! Roxie
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Dx'd with Spinal Arthritis 09
Upper and lower Spinal Cord Stimulator surgery
Replaced IV port 09
Had surgery for IV port for IVIG infusions 07
Halo 360 & 90 procedure for Barrett's esophagus
Dx'd Chronic Axonal Neuropathy & Myopathy June 07
Dx'd IC May 2006 (after suffering for 25+ yrs!)
Gall bladder surgery Aug. 2004
Gastric Bypass Dec. 2004
Dx'd: Barrett's Esphogus July 2004
Bladder surgery 2000
Dx'd: IBS 2000
Hysterectomy (fibroids) 1999
Laminectomy 1989
Dx'd: Degerative Disk Disease 1989
Cyst removed from my ankle -twice 1986
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Old 07-05-2007, 10:10 PM #10
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Default

Alan has had around 10 or 11 infusions so far. He gets them (previously two times a month), now, he will start to get them one time a month. Been about 3 months I guess. Can't remember.

And about the rain. Right before it rains, my feet and legs burn.

But not as bad as they did before I started on the B-12 methyl. Big difference there.

Tonight every thing is burning me. The air is thick with humidity out there.

I am also very stressed over my son tonight so my stress level is affecting my body. I know this. I used to have spasms.

In a few minutes, I'll take my alprazolam and drift off to sleep.

Then nothing bothers me. Thank god for sleep, that's all I can say!!!!

So I'm happy you had good results.

Take care,
Melody
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