I will have my next infusion on Friday. It is my fourth but something gets changed each time. Last time my nurse did not use an infusion pump so I had to rely on her to tell me the rate and she went way faster than we had agreed. I talked to my pharmacist and her boss and they sent an infusion pump that will stay with me for her to use from now on. I will try to be online so if you want to post I will try to post.

Good luck! Do not hesitate to ask any questions you may have. Everyone is great and we all have different experiences ;)

I found food, lots to drink helped me. Also painkillers throughout and hydrocortisone before, I had no reactions then. Good luck, I just had my second this week, its all new to me.

Good luck!! Hope all ok !

Thanks everyone. I'm infusing now and it's going very well! I premedicated with benadryl, tylonol, and prednisone. Went up to 200, but started getting chest pressure, so backed it down to 150. It's taking forever, but its better than the side effects! I've been drinking (and peeing!!!) a ton and did have a light lunch. The worst part this time seems to be that it takes 7 tries to get an IV started; they had to call in life light to start the IV. Next time we are just going to start with them. Hoorah! I'm anxious to see how my body reacts to all this good, expensive "juice".... first insurance bill was $10, 951, I count insurance as a blessing. :-) And I'm thankful for great nurses today.

. first insurance bill was $10, 951,

I'm always amazed how much more expensive infusions in the hospital are as opposed to having them at home with a private nurse. My insurance company pays the hospital where my daughter infusions $11,000 and for the same medication they pay my home health company $3,500, including the nurse.

Its sounds weird to me when you are talking of money and insurance. Im in England and have the NHS. All treatment is free apart from buying the tablets etc.

It must be an extra worry, that people should not have to think about when they are ill.

We have a long way to go in the states in Healthcare.

@drux,

All medical care is free in the UK? I thought there is a separate 11% National Insurance tax on all income and that tax is just for healthcare. That doesn't seem like it is free to me.

Mark, WHY is home infusion so much cheaper? IVIG is very expensive ... and I don't understand this? Is it because you're getting your meds directly from the specialty pharmacy and there is no mark up? How would I find out about the cost savings ... would Accredo tell me that????

Everyone on home infusions gets their meds from a special pharmacy. The cost of t meds range from $53 a gram for Gammagard to $75 for Gamunex. The rest is what the hospital / specialty pharmacy adds as their margin for supplies and services.

That is absolutely CRAZY that the hospital does that big a mark up. Wow. That should be illegal. At some point I think I will switch to home infusion. Does the specialty pharmacy send the iv benadryl and solumedrol too? What exactly is the IVIG powder mixed with?

my infusion costs 4,961.00 every 3 wks i have it done in my doc's office that includes all the blood work that is drawn too. and it includes if i need to see my doc.

@ Midge:

My Gammagard S/D comes with some sterile water that I mix into the powder. I take Benadryl pills, and Prednisone pills, but I assume that if you were having home infusions in IVIG form that they would do whatever you need. I do mine as sub-Q on my own, so that's why I'm just taking pills.

It feels free as we have always paid those insurances and so its not a wrench. But then thats the NHS and England for you.

Ive just had my 3rd infusion and all is going well. The speed is going up too!