Had IV Gammaglobin today

[BJK7493@aol.com]

Just wanted to let everyone know I had my first IV gammaglobulin today.  It took 5 hours but I tolerated it well. It's amazing but the blue color of my fingers is now gone! Only 3 more to go this week and then I have to have them 4 days a month until December! I'm praying this is what it takes to turn me around.

Julie

[Kim]

You know we're all pulling for you, Julie.  A 5-hr IV treatment does not sound like much fun, but glad you at least tolerated it well.  Thanks for the update and please let us know  if you see results.

Take care…..kim

[Parisa]

Julie,

Glad to hear you tolerated it well today.  Do you know which brand of IVIG you are being given?  My husband gets Gamunex.

[BJK7493@aol.com]

I checked with the nurse and she said it is
gamaguard.  I get 50mg per kg.  My hands looked really good last night but converted back to purple and stiff over night.  I know i just need to be patient!

Julie

[BJK7493@aol.com]

Hi, I was wondering how long it took your husband after starting Gamma infusions to see a difference in the discoloration of his hands.  I have had 2 treatments now and my ulcers are all healed but my hands still turn blue or have a bluish cast to them.

 

Thanks

Julie 

[Parisa]

You've had a great response with the IVIG!  I'm sorry I didn't track the hand discoloration on my husband.  I hope your planning on doing the treatment long term to get through the winter at least.  Try to do the treatment as long as possible and when the doctor starts talking about stopping ask him why when you have had such great results.  If he insists, then see if you can wean slowly so you don't end up back where you started.

[BJK7493@aol.com]

I went to see the doc on Monday and he said he wants me to do another treatment in November and then take December off and see how I do.  I argued with him about it because the December one would be a freeby since I have met my out of pocket for the year.  He stood his ground and said he wanted me to take December off.  Not sure why. I would think I would need them the worst during the winter especially living in the Midwest during the winter.  I about fell over when I received my first EOB from the insurance company! Because he makes me go for 4 days in a row it was $47,000! Ouch that hurts the pocket book!

 

Julie

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