1. < Autoimmune Diseases

Anyone been diagnosed with CIDP? It's very rare

Posted by Foxauthor @foxauthor, Oct 28, 2011

Has anyone on this feed been diagnosed with CIDP (chronic inflammatory demylenating polyneuropathy)? It's very rare and not well known about. I can't even find it in the list of diseases on Mayo's site. It's on the web, and I am on the national registry with the GBS-CIDP national organization. Anyone else out there have it?

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jazzy27 | @jazzy27 | Jun 28, 2019
In reply to @tjp4 "I was just diagnosed and my doctor wants to use gamunex which is very expensive. My..." + (show)
@tjp4

I was just diagnosed and my doctor wants to use gamunex which is very expensive. My copay per infusion is almost $3,000. I can't afford this. Are there cheaper alternatives?

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I was given Rituximab and it worked great in 2 months

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3 replies
kruppm | @kruppm | Jun 28, 2019
In reply to @tjp4 "Hello, do u mind sharing what the name of your ivig medicine is? I was just..." + (show)
@tjp4

Hello, do u mind sharing what the name of your ivig medicine is? I was just diagnosed and my doctor wants to use gamunex which is very expensive. My copay per infusion is almost $3,000. I can't afford this.

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insurance punishes working, clean living citizens but pays up front for drug users rehab and their urine scans.....insurance = a license to steal! SHAME ON THEM!

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1 reply
tjp4 | @tjp4 | Jun 28, 2019
In reply to @jazzy27 "I was given Rituximab and it worked great in 2 months" + (show)
@jazzy27

I was given Rituximab and it worked great in 2 months

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Thank you

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sdswoboda53 | @sdswoboda53 | Jun 28, 2019
In reply to @kruppm "insurance punishes working, clean living citizens but pays up front for drug users rehab and their..." + (show)
@kruppm

insurance punishes working, clean living citizens but pays up front for drug users rehab and their urine scans.....insurance = a license to steal! SHAME ON THEM!

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I agree with your assessment of the insurance inequities. You work all your life and are punished for it. Illegal immigrants get better benefits than we do, too. It's a shame. ..

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sdswoboda53 | @sdswoboda53 | Jul 1, 2019
In reply to @dlcutler "I just joined Connect, and saw your post in another string about your post-infusion arm pain...." + (show)
@dlcutler

I just joined Connect, and saw your post in another string about your post-infusion arm pain. In September I had two infusions of Flebogamma in my left arm and a month later, one in my right. After that one, I had intense pain just as you describe--elbow to wrist. Since I have nerve pain in all my limbs, I figured it was just more of the same, only it lasted longer. It's been eighteen days and the pain is better, but still there. Maybe it was triggered by the IV? Did you find out anything about your post-infusion arm pain? Also, I had severe headaches after each treatment. They lasted about two days.
I was diagnosed with CIDP in September, but my neurologist isn't sure about the diagnosis. My spinal protein levels were only modestly elevated (56), and I have hyperreflexia instead of hyporeflexia. Otherwise, I have nerve pain, muscle twitches, etc. So, I'm going to the Mayo Clinic next month. Hopefully they can figure it out.

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My Dr wants to do a spinal tap, too, but I'm too afraid of the pain I have so many chronic pain issues: fibromyalgia terrible pain all over my body 24/7, degenerative disc disease, bulging disks, interstitial cystitis, Pelvic floor pain, and now the CIDP on top of it...
I have gamma globulin infusions every 3 weeks. Hydrate heavily starting a few days before and a few days after. That does help some with the headsches. I, too, feel wiped out for a few days afterwards. I am treated in Grand Rapids, MI.

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sdswoboda53 | @sdswoboda53 | Jul 4, 2019

My IVIG is Gamma Globulin. The label on the IV bag said 10% solution

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Moderator
Lisa Lucier, Moderator | @lisalucier | Jul 5, 2019

Hi, @sdswoboda53 - are you feeling that overall, the immune globulin IV (IGIV) infusions are worthwhile? How are you dealing with the fatigue afterward? @sherlock - what are your thoughts on this?

@tjp4 - did you end up being treated with a different IVIG than the doctor originally recommended? I recall your talking about the co-pay being quite high. How is the treatment going for you?

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1 reply
tjp4 | @tjp4 | Jul 5, 2019
In reply to @lisalucier "Hi, @sdswoboda53 - are you feeling that overall, the immune globulin IV (IGIV) infusions are worthwhile?..." + (show)
@lisalucier

Hi, @sdswoboda53 - are you feeling that overall, the immune globulin IV (IGIV) infusions are worthwhile? How are you dealing with the fatigue afterward? @sherlock - what are your thoughts on this?

@tjp4 - did you end up being treated with a different IVIG than the doctor originally recommended? I recall your talking about the co-pay being quite high. How is the treatment going for you?

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Hello, they changed the ivig med to panzyga and having a infusion clinic administer the medication. Thus, changing to the generic my cost/copay is$0. Such a relief but I'll believe it after the billing. I had them out it in writing. I believe the infusions will start next week. I'm so ready for some relief. Hope your doing well

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1 reply
Moderator
Lisa Lucier, Moderator | @lisalucier | Jul 8, 2019
In reply to @tjp4 "Hello, they changed the ivig med to panzyga and having a infusion clinic administer the medication...." + (show)
@tjp4

Hello, they changed the ivig med to panzyga and having a infusion clinic administer the medication. Thus, changing to the generic my cost/copay is$0. Such a relief but I'll believe it after the billing. I had them out it in writing. I believe the infusions will start next week. I'm so ready for some relief. Hope your doing well

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Hi, @tjp4 - thanks for the update. I can imagine it would be a relief to have a $0 copay. It would be great to hear about your infusions and how they go for you when you start.

You talked about being ready for some relief. What symptoms are the most bothersome lately?

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