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Thread: Shortage of IVIG—infusion cancelled

  1. #1
    Distinguished Community Member Sunshine's Avatar
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    Default Shortage of IVIG—infusion cancelled

    The center called me to cancel my IVIG next week due to a national shortage of IVIG. They do not know when they will be able to get more. My reading online is that the shortage is expected throughout 2019 for complex reasons.

    All I know is that it keeps me well. BEfore IVIG, due to CVID, I was constantly sick with bronchitis, sinus infections, resulting in severe asthma. And it def helps the MS fatigueand the SPS stiffening. Any illness kicks up spasms, so this is scary and frustrating.

    I am waiting for call back from Neuro office about the game plan. I am sure they are frustrated as well. Its a big hospital that runs the infusion center.

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    Yikes! That's awful! Praying for a solution ASAP!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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    Distinguished Community Member agate's Avatar
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    I'm betting that some exceptions are being made and IVIg is being found for some people. Maybe you should be among them?
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Sunshine, I agree with Agate. With two diseases such as MS and SPS, you definitely need to go to the top of the list. Please make that known.

    My second shot of the shingles vaccine is not available. However, after finding this out I went to two other pharmacies and the last one told me to go back to the one where I got the first one. I did and explained the circumstances and they put me on a short list and said I should get a call in 2 to 3 weeks.

    So you see, sometimes things can be made available, if everyone becomes aware of how important it is.

    Good Luck
    Virginia

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    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by Sunshine View Post
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    The center called me to cancel my IVIG next week due to a national shortage of IVIG. They do not know when they will be able to get more. My reading online is that the shortage is expected throughout 2019 for complex reasons.

    All I know is that it keeps me well. BEfore IVIG, due to CVID, I was constantly sick with bronchitis, sinus infections, resulting in severe asthma. And it def helps the MS fatigueand the SPS stiffening. Any illness kicks up spasms, so this is scary and frustrating.

    I am waiting for call back from Neuro office about the game plan. I am sure they are frustrated as well. Its a big hospital that runs the infusion center.
    That happened to me once but they found some for the infusion that day. I wonder if it is because of a shortage in the blood supply. It is a product made from blood from a thousand donors. (Used to be anyhow)

    I did my second round of rituxan today so now I am set for 6months. I feel really great but my neuro keeps reminding me that it is probably the premed steroid that I am reacting to. I don’t care. I will take it.

    I have been having intense spasms in my ankle and up the shin bone. Happens when I am driving home from market. So bad I am afraid. When I got home I took several aspirin because the pain was exquisite, then in case it was from MS and not from a bad fall earlier that day I took a 5mg Valium. That knocked me out for hours and I slept well. Next day it was better but still painful. It is gone now so I think it was MS and spasms have been cropping up all over the place in the last few years. Hands, legs, esophagus and chest.
    Last edited by Lazarus; 06-17-2019 at 04:16 PM.
    Linda~~~~

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    Distinguished Community Member Cherie's Avatar
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    I have seen this happen at least 6 or 7 times over the past 15 +/- years. Hoping this resolves for you quickly. People do not generally realize that IVIg is a human blood product. It is NOT a drug. When blood donations slow down, IVIg also cannot be made in the quantities we have been accustomed to.
    Last edited by Cherie; 06-17-2019 at 05:09 PM.

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    Sunshine, sorry to hear about this. Since you take IVIG for three conditions, I hope you will make tha amount of noise that you urged Jeanie to make. Still, if they don’t have it, they don’t have it. <sigh>

    ANN
    There comes a time when silence is betrayal.- MLK

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    Distinguished Community Member Sunshine's Avatar
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    Quote Originally Posted by Lazarus View Post
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    That happened to me once but they found some for the infusion that day. I wonder if it is because of a shortage in the blood supply. It is a product made from blood from a thousand donors. (Used to be anyhow)

    I did my second round of rituxan today so now I am set for 6months. I feel really great but my neuro keeps reminding me that it is probably the premed steroid that I am reacting to. I don’t care. I will take it.

    I have been having intense spasms in my ankle and up the shin bone. Happens when I am driving home from market. So bad I am afraid. When I got home I took several aspirin because the pain was exquisite, then in case it was from MS and not from a bad fall earlier that day I took a 5mg Valium. That knocked me out for hours and I slept well. Next day it was better but still painful. It is gone now so I think it was MS and spasms have been cropping up all over the place in the last few years. Hands, legs, esophagus and chest.
    Laz, ask for the STiff Person Syndrome blood tests work up. Specifically, ask for the GAD65 test and the antiphysin blood test. If you google the diagnosis, you will see the blood tests. The rest of the work up likely not necessary since you have had most of it through your MS Evaluations and meetings with the neuro over the years.

    It was the intensity of the spasms that led my neuro to wonder about SPS in addition to the already diagnosed SPS.

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    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by Sunshine View Post
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    Laz, ask for the STiff Person Syndrome blood tests work up. Specifically, ask for the GAD65 test and the antiphysin blood test. If you google the diagnosis, you will see the blood tests. The rest of the work up likely not necessary since you have had most of it through your MS Evaluations and meetings with the neuro over the years.

    It was the intensity of the spasms that led my neuro to wonder about SPS in addition to the already diagnosed SPS.
    Thanks for the info.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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    Quote Originally Posted by Cherie View Post
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    I have seen this happen at least 6 or 7 times over the past 15 +/- years. Hoping this resolves for you quickly. People do not generally realize that IVIg is a human blood product. It is NOT a drug. When blood donations slow down, IVIg also cannot be made in the quantities we have been accustomed to.
    I had no idea IVIG was a blood product. A lot of treatments for these types of things including hemophilia have been made artificially in modern times instead of via blood. Many of my friends and family give blood. I would love to give blood for you Cherie and for you Sunshine, to have IVIG but I can't. :(
    Last edited by funnylegs4; 06-18-2019 at 10:59 AM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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