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Ivig alternatives

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6 years 3 months ago #66876 by Judy14
Ivig alternatives was created by Judy14
I've successfully been on ivig every 6-8 weeks for over 4 years. Just found out there's a national shortage and my hematologist (25minutes away) wants me on Nplate or Promacta since dex pulse and pre didn't maintain counts and I'm stressed...traveling for weekly injections and limiting vacations vs a very expensive daily pill since I'm on Medicare aren't great choices. Can one stop without issues if ivig comes back? Help!! Any suggestions welcome.
6 years 3 months ago #66878 by
Replied by on topic Ivig alternatives
You can get help paying for both Nplate and Promacta. Promacta will give you free drugs if you qualify. For Nplate you can get grants that will cover the portion of the drug cost that Medicare does not cover. IVIg is crazy expensive too, you just don't see the bill. You may have to limit vacations. I understand, but there are worse things.
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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6 years 3 months ago #66882 by Hal9000
Replied by Hal9000 on topic Ivig alternatives
Beyond what b2h mentioned. For Promacta, as I understand, there are prescription drug insurance plans available too - as extensions to medicare. In my cursory investigation, it could get Promacta yearly cost down to 5-7K or so (including premiums).
ITP Types and Treatments by HAL
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6 years 3 months ago #66883 by
Replied by on topic Ivig alternatives
Hey Hal, I sent you a direct message. Did you receive it?
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6 years 3 months ago #66885 by Hal9000
Replied by Hal9000 on topic Ivig alternatives
Oh wow, b2h. Thanks for the information. Very interesting. LOL, someone else moving in the right direction. Looks like a revision to the 'antibody' column in my ITP treatments table is needed soon.

There is also another study (which I've lost the link for, and can't find it again) which, as I recall, stated that one antibody always occurs in pairs. Not sure which two it was but it may have been GPIb and GPIa. Ha, I think two antibodies would explain why row 2 requires simultaneous steroid and IVIG treatments to get a full count response.
ITP Types and Treatments by HAL
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6 years 3 months ago #66888 by Judy14
Replied by Judy14 on topic Ivig alternatives
The cost of all of the alternatives is insane...I'm spoiled by Medicare covering IVIG, but Promacta out-of-pocket since I'm over their threshold will be insane. Where does one go for Nplate grants?
6 years 3 months ago #66916 by
Replied by on topic Ivig alternatives
I found this, which seems to be a pretty good list: www.needhelppayingbills.com/html/get_free_prescription_drugs.html
You could also do your own internet search for patient assistance programs. However, if you don't qualify for Novartis' Promacta program, I'm not sure how many other programs you would qualify for, but it's worth a try. You could also contact Amgen and ask them. I agree, the costs for many medications are really outrageous. Best of luck ~
6 years 3 months ago #66917 by
Replied by on topic Ivig alternatives
Hahaha I thought you would find it interesting and helpful. :)
Are notifications not sent out when private messages are sent?
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6 years 3 months ago #66922 by Hal9000
Replied by Hal9000 on topic Ivig alternatives
b2h, I think that study will be changing things. It was new too - this past summer. Don't know how you stumbled on it.
On page notifications that one has a unread private message would be nice. On the other hand. Public postings allow everyone to benefit and/or scrutinize.
ITP Types and Treatments by HAL
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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


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