Having trouble with supply of IVIG?
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July 11, 2008 at 12:01 pm
Hello again,
I haven’t written in a long time because it’s so hard to type, but I have read along with all of you, and I once again need your advice. After many years of IVIG therapy, I have become allergic to all the major brands now, except for Flebogamma. I break out in hives within the hour with any other brand; bright red rashes race up my arm, and soon cover my body, hand in hand with migraine headaches, and that sensation of wanting to rip the skin off my body, because of the heebie-geebies crawling under there… any way you get the general idea. Now, for the last two months, they have not had any Flebogamma available, at all. I was lucky to get any IVIG at all, as I was a high priority, and some unfortunate soul the day before had been turned away, without receiving any, at all… My angels of mercy worked so hard, to try to make me as comfortable as possible, with massive doses of Atarax, Solumedrol,Benydrl, and a follow-up program at home, for the next five days. My question to all of you out there is, is this shortage just in California? Is this a national shortage? Is anybody else having similar problems, and how is anybody else dealing with this situation?
It is a hard enough day, getting through those 9-10 hours!
Thank you so much for your silent support out there. Where I live, I have never even had the chance to meet another person with CIDP.It would be
hard not to feel all alone,like on a raft out at sea, if not for the kindness of the people at this site. Many thanks to all of you,
Jo Marie -
July 11, 2008 at 12:47 pm
IVIG is regulated by the federal government. It is only dispersed once every 4 months. So when we get close to that 4 month mark sometimes supply runs low.
Where do you get your IVIG from? Hospital, home care or infusion center? If you get it from a home care agency then you should never have a problem receiving it. Hospitals can trade with each other too to make sure no one goes without.
You may even want to place a call to the manufacturer of Flebogamma to see if they have a program to make sure you will receive your IVIG. Other IVIG manufacturers have programs in place for this type of situation.
I did a quick Google search & found out the manufacturer of your IVIG is Grifols USA, LLC.
Here is there phone number. You should call them & ask if can help make sure you get your IVIG on time.
Tel: 888-GRIFOLS (888-474-3657)
Good luck,
Kelly -
July 13, 2008 at 8:21 am
[COLOR=”Purple”]Hello Jo-Marie
Im so glad to see you here …missed you ! Im sorry for all the trouble you have recieving IVIG .
I hope you will get the brand you need soon .All the best
Maria[/COLOR]
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August 4, 2008 at 12:04 am
Hi Kelly,
Thanks so much for looking up that info for me. I go into the hospital for my infusions, as I have so many complications, and I know the hospital has a contract with Gammunex, as well. It is difficult for me to try to sit at the computer for long, so it was really kind of you to do the research for me. Thanks again for your kindness, and I am so glad to hear Emily is holding her own! Love and blessings to both of you, Jo Marie -
August 4, 2008 at 12:11 am
Dear Maria,
It was wonderful to hear from you again! I hope you are doing well, and your health is okay. How is your daughter doing? I have been getting weaker and weaker, and hardly leave my bed, except to go to hospital. But I am lucky to have a loving family, and a strong faith. Much love to you, my friend, Love, Jo Marie -
August 4, 2008 at 12:23 am
Because I’m also high priority I get my brand of IVIG straight from the regional pharmacy supply company. Delivered to my door at home. Even at the neurologist’s clinic it was from them-my private medical insurance pays for it all. Been through two shortages of it and I crashed quickly. Just glad now I am getting the 300 mg. I need monthly.
I know a lady who goes in-patient for her infusions due to extreme reactions to any brand of IVIG but it helps her so much in the long run. She does this for 5-6 days each month for a total of 60 grams. Yes, very slow drip rate as you can imagine. Her neuro comes to see all the time at the hospital. It’s been done this way for 5 years so far. She needs a lot of medications to tolerate IVIG.
Good Luck.
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August 4, 2008 at 3:51 pm
You can sign up with the manufacturer directly to be put on a special list. The list puts yhou in a pool of other enrolees whose yearly allotment is put asside before other institutions get it. It is a linited enrollment each year, so you have to contact them and see if they are excepting new members. i did this for Kevie through baxter (gammaguard) with a program called gammassist. The program also has other benefits. Gammunex does it as well, i signed up with them as back up.
Dawn -
August 4, 2008 at 6:12 pm
and substitutions of brand without notifying either myself or the prescribing doctor by a hospital… and only one instance of a shortage from my infusions supplier. I contacted that magazine IG Living? And they had a list of alternatives who could trade off with my supplier if needed, but I my pharmacist found a ‘source’ to trade off with.. This magazine’s staff has been very helpful to me and to at least a dozen others I know of in terms of getting what you need when you need it! Either thru distributors or thru the manufacturers. They are quick to respond to e-mails or to phone #’s truly.
We have to have What We Have To Have. There often can be NO substitutions! Nor should we have to tolerate them.
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