All who have spoken before are very right!

September 5, 2010 at 6:51 pm

One thing about IVIG? Tho? It isn’t a drug per se? It’s essentially a ‘pastureized hydrolyized blood-product’. Sooo, somehow? It’s more tightly controlled than many/most drugs. And, sadly a heap more expensive but for insurance!

Come my 4th week and due for new infusions? I am like a dog who hasn’t eaten for a week! It’s not like an addiction, more like I am missing something very essential to my well-being.
Simply put? ‘Something’ is either missing or awry with my current immune system. The IG is the one thing I can take that sets things onto a more even base.

One important thing YOU should keep track of is how good you feel during, right after and then each day from there till your next infusions? Why? So the docs can know IF what doses they are giving you and how often are effective! There should be lots of blood work testing your basic immune functions if you’ve just started, and they should continue for about 2-4Months. Then your docs, if diligent? Should be able to adjust your doses and schedule to keep you on a positive track.

Nancy? I tell you, what you are describing about the despair is soo true! I’ve been there. I no longer tell friends much when asked:’How are you Doing?’ Because I know they’d be uncomfortable with whatever I had to say about IT.
And they DO!
When I got this? I did NOT take a simple diagnosis of PN as the true diagnosis. Why? Because of sites such as this. I learned and read and listened to my body which said? Get me diagnosed! And I did what I could while I could when I could….and I GOT IT! I’m now 8 years out. And still trying to get ‘better’. We can and we will!…. Just don’t give up, please!
Hope and good things soon for you!