Your insurance should cover IVIG. The cost is hideously prohibitive to pay for out of your own funds. Check to see if your provider covers it. They may make you go to an infusion center. Initially I was told I was denied, but I was only denied for home insurance....later I was denied all the way around, but fought it and got it.

I don't take the Benadryl due to my restless leg. I just premedicate with tylenol....period. One can have a reaction, because one never knows what is in each bag, since it is pooled antibodies....from thousands of people. (Don't think about that....I try not to.)

I am still having some disease advancement, but without IVIG, it would be much, much worse. Some people are lucky enough to have a total remission.

For me this year the 'deductible' went up, as did the 'catastrophic' deductible, which used to be one and the same. Now they are different. I'd get things met w/my percent of the infusions about 20% and I'd met all deductibles for the year by FEB - IF they submitted claims properly and on time... but the infusion provider hasn't done well in that quarter for more than two years and it's getting both stressful and funny that the provider and the insurer can't talk it out about how to file claims right....as a result I've gotten some whopper bills from the provider that would scare your socks off! I dutifully call the insurer and the provider each time it's wrong [every month] and am promised that it'll be fixed [wrong each subsequent month] and It is getting down right silly. But...once the key deductible is met? You should be home free. As for getting things set up? It's the doc's office responsibility w/the diagnosis and filling out the insurance forms correctly...
All I know is that after my first 4 day infusion in the docs' offices [they no longer do that now] I went out and shopped for the first time in 15months! I walked and felt alive and didn't have too much pain afterwards, as I would have w/o the IVIG. WHO would have thought that walking thru Kmart would be a treat?
I did have a reaction from an infusion in the hospital? But I found out later that it wasn't the prescribed brand, it wasn't properly handled from the pharmacy to into me and my reaction wasn't properly attended to. After that I switched to the home infusions, which is where it's been only billing issues, not service issues or nurse issues- The latter two are GREAT!
One interesting thing I've found about getting IVIG? Is that I get a terrible attack of the 'munchies'-I am ravenous often after a really good infusion!
There are other side effects at times, that I won't go into, but go find out the BRAND and web up 'brand name prescribing information' and read all about the stuff! Sooo, if you get any side effect? you won't panic, you know that it IS a side effect. 's And where is SILVERLADY [-billye] when we need her? She has the Sjogrens' and has been a great contibutor to this board in the past.... Billye? Are you out there? Hugs to all! - j's

Mere,

Here is a good article on Sjogren's.

http://adisonline.com/aging/Fulltext...apeutic.3.aspx

It is long but really very accurate.

Thanks for the info on IVIG and link on Sjograns. Also, the link on IVIG was interesting. My rheumatologist gave me some med to increase secretions (eww) called Evoxac. Although my antibodies are negative for Sjograns, it does seem to be helping the dryness...

I just called my insurance company and they said they will cover IVIG as long it is medically necessary (duh). If administered in a doctors office, it is the copay amount. If administered in an outpatient facility it is covered at 80% (after deductible is met). I would imagine at 20%, the cost may still be quite high, though I really do not have any idea of what it would be.

I would imagine that it would be done in an outpatient facility... my deductible has been met since January because our insurance requires a deductible for anything that is not a doctors appointment. Although, I feel fortunate to have insurance, this is the worse plan we have ever had and it is more expensive to boot... My husband works for a fortune 100 company and all of their senior management took huge bonuses this year and last year. The employees such as my husband have not had a pay increase for three years now. I guess he is just lucky to have a job. But you know, he has already put in over 30 years of hard work to this company and he never knows if his job is going to be there from one day to the next. IRIF's are like a flavor of the day. Welcome to the real world, huh?

Okay, I will get off of my soapbox. I do consider us as pretty fortunate. I just have to rant from time to time.

I am feeling lousy and that makes me feel so cranky.

Mere

It can be $6,000 a month or more. In a hospital much more.

I understand this... sometimes it's the little things that mean so much. I would love to go shopping and not hurt or feel as though I need to pre-medicate.

Mere

I;m on IVIG loaded over 5 days in December and two days a month since then,, for me it hasent done a thing, my neuropathy just keeps getting worse,, I went to Gasto on Monday,, he said I have IBS even after telling him I have sensory neuropathy,, he assured me it was IBS,, and said drink a bottle of citrate and use more fiber,, went home drank the citrate and all that came out was this horrendous black stuff,,, I called him black,, now hes alarmed,, says I may have bleed somewhere,, and this was after telling him,, look sometimes when I go its tarry and black,, now I cant go at all,, thanks to the idiots I have for doctors,, seems like there just marching me down the road to eternity

I am very, very sorry to hear that IVig is not helping and that you are so ill... It certainly is frustrating to go through the testing and dealing with doctors... I hope you get some answers soon. It definitely sounds like you need some answers.

Mere

using a cheaper product, BUT charging the insurance CO for the higher priced product...which at the time was about $55 a gram? W/the cheaper product being about $10-15 less than the prescribed product...ergo? HOSPITAL PROFIT? NOT when I'd contacted the FDA and the state as they'd not contacted my neuro about the substitutions, which by law is a requirement? So they GOT A couple of $K w/e 'mistake'? Eh?
For me tho, I get to pay 20% of the bill, until meeting the deductable, so usually about $3-5K up front IF they present the bills properly to the ins. co and on time! Once you meet your catastrophic? {After 2 months if things are done right? [in my case not ever settled until JULY?]} You shouldn't have any major co-pays except for surgery or other funky surprise issues [And Ive had them all!] As long as your paperwork goes in w/o fuss? And comes out paid the same way? Go for it!
I've got to ask tho? The dose? Was it enuf? Go read the 'prescribing' info of the product and keep track of that dose! Lots of docs tend to be 'conservative' when agressive mite be the better option? Actions and reactions to infusions can also be aleviated by some preparations prior to infusion and diet tricks that should you get the 'flu like symptoms' can get you around it all.. I had NO HELP in this quarter? Just followed my nose and did common sense things, which I KNOW you would do anyhow!
It's worth a try, tho many don't get results rite away? That's either due to NOT enuf? Not the rite stuffs? Not long enuf? Or, the wrong condition. Thus a different treatment could be in order...or not.
It can get squirrelley! Hang in there - be forthright and PERSISTENT! And go for it! And may things WORK! So there! 's - j