where is our IVIG??

Lisa

I’ve had to wait a week when there was a shortage here.

You could call or email Baxter, who is the main provider of IVIG or call the
American Red Cross who also makes it in crystalline form that you mix the
glass bottles together.

Or, have the pharmacy where you have it done call around to other hospitals
or home health agencies.

I have it done at home and on two occasions they ran out, or Baxter had a
recall…so the home health pharmacy went to another one and got it for
me.

Good luck

Miami Girl

Hi, Lisa.

There’s been a worldwide shortage of IVIg over the past year. There are a lot of factors that have gone into the shortage, but it appears to be getting better. It will just take time to get better everywhere, I’m afraid.

Keep fighting.

Deb
London

Lisa,

There is a shortage but I have been lucky that it has never affected me personally, I go through U of Michigan Hospital for my infusions. Here is a link to some information on the shortage, Dr. Katz who is on the GBS Foundation advisory board is mentioned:

[COLOR=Blue]fffenterprises.com/News/MediaRelease/2007-05-10.aspx?bhcp=1[/COLOR]

(cut and paste the link)

Jerimy

Hi, Lisa.

Congratulate and thank your family and friends for donating blood. That’s certainly a step in the right direction.

Regrettably, there’s not much that any individual can do about the IVIg shortage. It’s not so much a problem of shortage of blood as it is manufacturers not making enough. I attended a meeting in London a few months back about it and posted a report on the GBSSG (the UK support group) forums at [url]http://www.gbs.org.uk/cgi-bin/ikonboard3/ikonboard.cgi?s=46a99b040a66ffff;act=ST;f=1;t=1300[/url]
in which I discuss what was said about the shortage. In addition, Dr John Winer addressed the issue at the GBSSG conference in April–a report on that will be in the edition of ‘Reaching Out’ which is coming out next month. Some of the information, of course, is localized to the UK, but much of it applies worldwide.

In the interim, some patients are opting for experimentation with other treatments–plasma exchange, steroids, other drugs.

Keep fighting.

Deb
London

Don’t know if this will help, but for the last 2 years, I have been getting my infusions at home. My doctor orders the medicine through IGG America, which is basically a mail pharmacy. You may want to check it out. I am fortunate that my insurance pays for this and the nursing agency- except of course the deductibles. The website is iggamerica.com

Best of luck in finding IVIG.

Dennis

If you go through a home care agency then you really shouldn’t have to go so long without your IVIG. Our home care agency will practically beg, borrow & steal to make sure that their patients receive their IVIG on time. Some times it’s a little later than they would like, the patient has to try a different brand or they don’t get the full dose but the home care company really works hard to avoid it.

Luckily we haven’t been affected by the shortage. The only thing that changes sometimes for us is that we get 5 or 10 g bottles instead of the usual 20. That’s when I know that times are real tough.

I hope you get your infusion soon.

Kelly

Hi Lisa,
I have to get my infusions at the hospital, because Medicare will not cover for home treatments, and they are always having a crisis over shortages. Because I am allergic to almost all brands except for Flebogamma, usually what happens in a severe shortage, is that they will give me one of the other brands that give me severe allergic reactions, but are easier to get ahold of. We all need to urge everyone we know to donate blood ! They have never cut me off completely, because of the severe consequences it would encure, thank God. Good luck, in the future, maybe getting your doctor to contact the hospital on your behalf would help. Love, Jo Marie

Hi Lisa,
I have to get my infusions at the hospital, because Medicare will not cover for home treatments, and they are always having a crisis over shortages. Because I am allergic to almost all brands except for Flebogamma, usually what happens in a severe shortage, is that they will give me one of the other brands that give me severe allergic reactions, but are easier to get ahold of. We all need to urge everyone we know to donate blood ! They have never cut me off completely, because of the severe consequences it would encure, thank God. Good luck, in the future, maybe getting your doctor to contact the hospital on your behalf would help. Love, Jo Marie

JoMarie

I was told not to give blood from my neurologist because I do the IVIG. One
time I did it at work, to start the blood mobile that came by, so others would
do it too..the next week I told my neurologist and he yelled at me for doing it.

So now, I’ll ask others to do it…lol

Miami Girl

Hi Lisa,

I think I know how you feel. I am not wild about new things. I had IVIG for 9 years and it worked well. Then like you I had a reaction that they labeled “anaphalactoid” and my two docs said they would sign no more orders for IVIG. They put me on plasmaexchange, tubes in neck and all. It has worked well but is very time consuming. 5 days every 4 weeks is a lot more than one IVIG every 3 weeks, plus I must now travel 3 hours round trip as opposed to 10 minute round trip for IVIG. After two years plasmaexchange I now have a fistula in my arm and it is a lot simpler and much safer than the neck catheters. I hope that your experience with pe is as good as mine.

Why hospitalized? I go into the dialysis unit as an out patient for my pe.

Lisa,

I have to ask the same question as Bill, why hospitalized? I go to my hospital’s in-patient dialysis unit, but they treat me as if I was an out-patient. The process takes about 2.5 hours, and I am a big guy. If you are small, it might take only about an hour.

By the way, at the Symposium in November, one the the doctors, I think Asbury, but I now don’t remember, said that 4 plasmapheresis treatments were better than 3, but 5 were not really better than 4. He was talking about GBS, but it still might apply for progressive CIDP. For your first round, I would still stick with 5, but if it becomes your main treatment, then you might experiment with 4.

Unlike Bill, I needed IVig once a week. It took 8 hours to do my infusion (like I said, I am a big guy) and it did not work that well. For me, PP is more convenient. I am able to go 26 to 27 days between treatment rounds. I then get 4 treatments every other day (skipping weekends).

Unlike Bill, I have stayed with my tunnel catheter. I have had it for over 1.5 years, with no problems with sepsis or thrombosis. Eventually, I too will get a fistula, but I am trying to put it off. Even with a fistula, venous access could be a long-term problem.

I hope your experience is as good as mine is. Pretty much, without it, I cannot function. With it, I lead a 85% normal life (10% abnormal from the PP itself — what’s normal about a tube in your neck? and 5% abnormal from CIDP effects that don’t quite go away).

There is only one downside for me. I must hydrate. I drink at least 0.5 gallons of water a day, in addition to whatever else I might drink, starting two days before and continuing during the treatments. I urinate a lot during this time. However, I develop low blood pressure from the treatment and hydrating minimizes the problem.

Godspeed with it.
MarkEns

Hi Lisa! I’m so sorry to hear that you are having a hard time getting your IVIG. Have they called all the big Dallas hospitals, ( Medical City, Baylor, or Parkland), I know they always try to have some available. As for the plasma pheresis, it’s not so bad. I’ve never had to have it on a routine basis, but for my GBS it’s worked liked a charm twice! Good luck!