Paddy? Could you explain what….

May 26, 2010 at 8:37 pm

being on ‘IVIG for the past five’ means? Is this five months or five days…. There are a whole different slew of ways of approaching IF IVIG works or not? ASK your doc or nurse what brand of IVIG and how much IVIG and how much each day…. It ALL adds up to make a big difference. Why? Because mostly ‘loading’ doses [the first ones] are smaller but over a longer period of time… TO see if you can tolerate it at first? Then, they’ll do or should do blood tests to see if there are changes in your overall basic inflammatory indicators w/the blood. After that? Things could go up, especially if you can tolerate infusions [some folks simply cannot?] and then, further it becomes a question of HOW much does it take, IF Any, to make a difference? Face it if you read up on IVIG? For some folks it does not DO a thing! But, for many, IF prescribed a good brand, and at a good dose over an adequate time? It can work! The odds vary widely as to how it works? Mainly because we mite not have what we ‘think’ we do? Or what’s given us isn’t the rite product WE/You need!
I went thru a spell where I was given other than the brand prescribed to me. I thot I was going crazy, as IT’d worked soo well before? Once I found out of the substitutions [which are against the law[subs], for many reasons?] I knew WHY I was feeling less effect. It was done by a respected medical provider? And they’d cheated-using less expensive IG products for several months without notifiying either the prescribing neuro or myself… Worse yet? My insurance was billed for the higher cost product, when what I got wasn’t even NEAR it! I truly WANT to know WHAT is being put into me! IF there are any SUBS? There are LAWS that aren’t always enforced and who suffers the consequences? WE do and the Insurance co’s do! Before I get and deliver a new prescription for IVIG? I make a copy of it that goes to the specialty pharmacy. I’ve proof then of what they SHOULD provide! Start asking questions about ‘substitutions’ for IG products? I bet you will get some eye-opening experiences!

Don’t give up yet? Please, Talk to your neuro and ASK hard questions! Are there substitutes [HE/She can get access to key info] Is IT enough? Doc can tell, in part by bloodwork-ups.. etc.. Then, most important of all? Once you get the dosage right? RESULTS! And that IS what I hope for you!!! Right Dosages+ right Product+ right timing = results- Plain and simple? Not really but, should be?
Keep asking questions and pushing things along…for now? ‘Nicely’? Because if you come on hard and agressive? They all are gonna back off and maybe shred key docs! This is where the being ‘dumb/smart’ comes into play. Non-threatening, yet, ‘curious’? That’s what I did and I’m amazed at how well it worked? Had to call the state’s insurance regulation board for ‘blood products’ [After contacting my congressmen fed, and local to get the legislations] and wow! Their investigation turned over that infusion center BIG TIME! Don’t forget, knowing what’s right? Helps not only you, but OTHErs who have NO CLUE! Think on it? No doctor is a ‘god’, least last time I looked? Besides, docs like ‘challenges’! We keep them from getting ‘dull’!
Hope for the future? Let us know, please!!!!!!!!!!!!!!!