i have changed ivig 3 times the last change due to octogam being recalled...i had no trouble changing each time...but keep in mind i rarely have too many side effects except some flu like symptoms....and usually it is because i am running through 45 g in less than 3 hrs....if i slow down the effects get better...but i have not had any problems with change...

I started on Flebogamma and had HORRID side effects, then went to Carimune, then Privigen and ended on Gamunex (preferred by Childrens Hospital as it is well tolerated). I can't find anything online saying Gammagard SD is discontinued...weird its the lowest iga product out there I think. Here is a link to all the products on the market:

http://www.primaryimmune.org/patients_families/prod_safe/ivig_chart.pdf

Here's the link to Baxter's website and it doesn't say anything about being discontinued. Its listed in their product info:

http://www.baxter.com/healthcare_professionals/products/index.html?t=immunoglobulin

Woah! Who told you that, CYB? I'm also on Gammagard S/D and haven't heard that it's been discontinued! I was told that the 10g bottles are on back-order, so my specialty pharmacy has been sending me 2 5g bottles instead.

I hope that whoever told you that was mistaken, but please let me know what you find out.

Thanks :)

My youngest son is on Gammagard S/D,I can assure you Gammagard S/D has NOT been discontinued. I'd suggest calling Baxter's patient program, Gardian, and they can help you and your doctor resolve this.

www.MyGardian.com

Gammagard is still out there. I get it every 4 weeks and have been for years. I also called the company last week to ask about my hair loss among other issues. Of course they had no answers. Did you know the companies only keep up with side effects for up to 12 months of treatment?

could it be the hospital pharmacy doesn't want to order it because it is the most expensive? Is it a hospital formulay issue. Were they saying it was discontinued by the hospital pharmacy and not Baxter?

I'd make sure I remembered the name of the individual who told me that fabricated story

ok - here's the scoop. I called Baxter myself and they assured me that gammagard s/d was NOT discontinued. Sorry if I alarmed anyone!! My doctor called as well and they said that gammagard s/d was perhpas low in supply and that there is a new product: "gammagard s/d iga

Yay! Good news! Thanks for verifying CYB! :D

ok - here's the scoop. I called Baxter myself and they assured me that gammagard s/d was NOT discontinued. Sorry if I alarmed anyone!! My doctor called as well and they said that gammagard s/d was perhpas low in supply (but not discontinued) and that there is a new product: "gammagard s/d iga

Long story, but here goes. I did not get my infusion on Friday. The doctor's original order (erroneously) said that substitutions were permitted. So the hospital pharmacy substituted with flebogamma. I noticed the new label and told the nurses I would not take this without my doctors approval (they were ready to administer it!!) So after some calls, my doctor said absolutely no way was I to get this product. Now for the twist. The hospital pharmacy claims that I have already gotten this product for the past 2 months! Well, I keep an infusion log and I check the bottle and write down the lot number before my infusions. I AM CERTAIN that I have never received Flebogamma. I'm very disapppointed that the hopital pharmacy thinks that I have. Also - the nurses logs do not show what I've been given. They only track that i've been given "IVIG" and don't write the product down. It was a comedy of errors, which was funny at all. Who would have thought that I needed to videotape my infusions just to prove what was administered. Wish I would have now.

Those bottles have a product label that peels right off and sticks in your book lickity split! Has the lot # and expiration date on them :) You can ask for the sticker rather than writing it all down. (I believe they come with 2 stickers on each bottle because my nurses would get one then so would I). So glad your doc came through :)

And once again, the patient has to take control of their own treatment. You would think that being a nurse I would be offended by my own statement. But....NOPE. I would tell families to never let a loved one stay in the hospital over night by themselves. You never know what could/will happen. Most of the time the patient is drugged and mistakes happen.

I am so proud of you for standing up for yourself and doing the needed research to keep yourself protected.

That being said, I'm still in a OMG situation. I get my first S/D Wednesday and have researched that it's not advised for people who react to IVIG. Got all the pre-meds on hand just in case and will have my cell completely charged just in case.

Kelli is right about the labels. Those are there for your taking. TAKE THEM. What type of facility are you getting your infusions in that all this has not been well documented? That would be my first concern.

Good Tip, Kelli. I will.
lekpink - good luck on wednesday! Hope all goes well. I've never had a problem with S/D after my first infusion which just way too fast. The nurses did not have a clue. The sad part is I go to one of our major medical facilities. I have talked to my dr. though and since I'm doing well on ivig, we are going to start home infusions.

Thanks Kelli, and everybody for the tips. When I first began IVIG I was going to keep a medical journal and keep track of everything. It never happened. Now, hearing this I realize that I am an idiot for not doing this. I am starting this week at my infusion. It will be 3 years in June.

It doesn't surprise me that the hosptial pharmacy screwed up, and it doesn't surprise me that I come across mistakes made by professionals. Some of them are very serious, even deadly. I recall reading the stats on hospital related deaths a couple of years ago. It was all over the news. With us, I can understand why allot of us have bumped up against this before. Just think of how often we encounter doctors, nurses, pharmacies, hospitals and clinics. It seems much more likely that patients with this much exposure will run into something gone wrong at some point. I know that I have personal experience with medical mistakes, a couple of them were pretty bad. Being on guard is the smart thing to do and the responsible thing to do. I am so disappointed in myself for being so lazy.

Because of your comments, this week, when I get infused I am starting my 'new book'. Thanks to you all for more inspiration and reminding me how important the record keeping is.