It was a decision I made [thanks to the 'web'] rather easily? My options were steroids [not likely as I was already on the 'line' for osteo]; plasmapheresis or IVIG. The IG seemed the least invasive and actually the most organic? [If you can call 'pasteurized/processed blood product' 'organic'?] Well, you get my point.
For initial IVIG infusions they do DO it in a hospital or approved outpatient setting. WHY? some folks really react! to some pieces of the IVIG product. Those reactions aren't nice, truly - but are rare. After two plus years at a hospital for infusions, I've had one very bad reaction IN a hospital but was 'released' and left to go home after that...The staff has since been 'retrained' as I complained to the State Hospital Board... I had aseptic meningitis -a whopper of a headache! But, that was only once out of several years of infusions! It was a badly prepared and stored 'batch' and there are ways to tell what's good or not.
I now have infusions at home and the meds are delivered the day before, and nurse comes the next two days. This is great, as I've got to pre-med w/lots of benedryl to prevent any other reactions and I am one dishrag after infusing, to a happy dishrag! I used to feel uncomfortable about a stranger in my house/home when being infused? But the nurse I got is a treasure! And I know I'm very lucky to have her! You must make your own decisions tho? Also what your insurance can LET you do is also critical...tho I've found home infusion about 60% costs of hosptial infusions? Well, what your insurance company allows? IS what you get? Ask your Neuro's office - they are GOOD at that kind of stuff and to get the paperwork all lined up like the ducks they should be! Hoping you give it a try? Praying it helps! We shouldn't have to hurt so much! - 's and good luck to boot! - j

Thank you. I have been hurting and feeling ill for so long... Sometimes, I don't realize how bad I feel until I have a 'good' day and then it is just like a teaser because it does not last. I am still on the fence about IVig and have another option to exhaust (Mestinon). My neurologist said that he can prescribe IVig for me and arrange it so that my insurance will cover it (I will believe it when it happens).

It is very reassuring to me to know that you are out there and that I can ask you questions about it... May I ask what type, or what, has caused your neuropathy?

Thanks for writing Dahlek, and I hope you are feeling well. back to you,

Mere

P.S. I understand how you feel about steroids. I was on 20 mg per day for arthritis (a couple of years ago) and it made me feel manic and it also made me cushinoid. I am now on 3 mg (a very small dose) and it is an acceptable dosage to me, but I would be very reluctant to take any more than that.

well, first e-mail me and then let's go from there?
I turned [eeeeekkkkk] 60 this summer while in rehab for a VERY BAD Osteo break.. The whole nine yards w/titanium and rods and pins and screws etc... Totally ickkky! It was NOT a FUN day by any means..
Osteo is something that Mrs D can be a whiz at, to degrees, but when I'd first had PN onset, I was put onpain pills [anti-seizure meds such as neurontin or lyrica] that literally suck calcium outta you. Ergo the first to show issues were my teeth to the comma behind the total dental bill sort. Next I was diagnosed w/ Breast Cancer and THOSE meds do an even worse # on the bones! So...I weaned myself off the 'pain' pills and gritted my teeth [which are still with me? Whew]
Thus before all this all above happened, I knew I was very borderline for osteo, and docs had been following me closely, [lucky to have not only good ones? but smart AND nice ones!] Soo the neuropathy was the 'only' issue then, but knowing I'd a family history of cancers and osteo's... My neuro suggested the IVIG, as I said..I concluded it's the most 'organic' of therapies...but! IT AIN'T CHEAP!!!
Here is a web site about costs.... half way down?
http://view.fffnews.com/?j=fe5915707...&WT.mc_id=&r=0
They are sponsors of IG LIVING magazine... http://www.igliving.com/
It's free to sign up? Its informative and it does have real live people to answer questions about WHY SHOULD I USE IVIG? and the like...they've been great for helping me on one occasion, and I've referred others to them and they've been beyond super!
All in all, it AIN'T CHEAP stuff, it's precious stuffs and for 40-60% of us it works! For me it does and I've a heap of immune issues that it addresses and helps keep me walking and plain old functioning!

's in the interim... I'll try to plug you into good research? But I mite have to actually work at it, and w/infusions? To get updated stuffs. Plus 3 benedryl each of my next two days I'll definitely be a zombie of sorts. Never know tho?
Don't be scared about it? It's kind of interesting at first, and then? boring after that, esp. when taking heaps of benedryl!
In the meantime? Know that I view my infusions as being 'refueled' and I feel soo much better afterwords!
Hugs and hopes for you for the interim... - j

I have had very little bad effect from IVIG. They do a loading dose to start with, 4 infusions over 4 days. That is what seems popular here, in our area.

I have had 2 loading doses, since they started it a few years ago, then stopped for several years....tried IV steroids...(16 weeks....never, ever again...I swear it damaged me.)

I did puke one day during the second loading dose after they decided to resume IVIG when my ANA went way up, but they were running it in COLD and fast, a big no no....I tried to tell them but the home care agency nurse argued with me.

I get it in an infusion center now and they are very careful. It takes 2 and a half hours to get it done. Sometimes, some days, I feel a bit funky, but in general, I tolerate it pretty well.

I would give IVIG a try before any other stuff. It works with your body.

Thank you both Dahlek and Cyclelops for sharing your experiences about IVig. I thought I had been through quite a lot but you both have had your fair share! What a terrible situation with the osteo break Dahlek... I saw my rheumatologist yesterday and he was positive in support of trying the IVig. He did mention that it can cause anaphylaxis and the need for Benedryl. Thanks for the links, I will take a peek at them.

I still have not received any results from my neurologist on the labwork from Athena... It may not make a difference anyway if the results are inconclusive.

I don't know if I can afford the IVig. I no longer work because of my illness.

Hope you are having a "good" day and that we all get through all of the crummy weather soon!

Mere

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