Newly diagnosed, questions IVIG?
 

Hello,

I have had mixed connective tissue disease and recently got diagnosed with vascular peripheral neuropathy that is affecting some of my autonomic nerves also. I have had MCTD for 9 years and have had numbness off and on coming and going all during this time. I guess it just now showed damage to legs.
I am having a relapse and the neurologist wants to me to take IVIG treatments. My question is has anyone had this and how did it work? I have read good and bad. Also, does insurance usually cover this and is it costly?
Susie54

IVIg
 

I just went through the whole testing process with a neurologist with respect to IVIg treatment.

Yes, it is very expensive. But yes, insurance will cover it as a treatment once you go through all the testing hoops. The blood work is very elaborate and pricey. The other tests needed, at least for my insurance company (Blue Cross CA) to pay up are rather invasive. I've unfortunately had a really bad reaction to the spinal tap which was performed, and the other diagnostic test is a muscle biopsy, taken from your thigh and then stitched up. Holding out on that one for the moment.

Welcome Susie and you have asked good questions....
 

First off to find out LOTS about IVIG look at this site: http://www.igliving.com/
They can help demystify the insurance issues if needed, but first let your Doctor work things out...You won't get it if you don't get pre-clearance.
Another good source about IVIG is this site: http://www.cidpinfo.com/treatment_op...apy/index.aspx While this deals with CIDP, it does also deal with the actions/methods thru which IVIG works.
As for getting IVIG either at home, in an infusion clinic or in a hospital, this site is good to tell you what a nurse should do and be looking for in the infusion process:
http://www.resourcenurse.com/feature_ivig.html
I 'had' another site, but can't find it now, but this will give you the 'basics'.
As for IVIG working.....some stats say it works 60% of the time, others say 30-50% and variations depend on the brands, length/quantity of infusions and also how long it took from onset to diagnosis/treatment. Obviously the longer for the latter the longer it mite take to kick in.
For me I'd started on a four day infusion where by the end of the first day I did feel less tightness and some less pain. On day four I felt great! It doesn't last tho, and I usually can't wait for my next infusion.... I have only had one truly bad infusion experience [in a hospital BTW] in over four years of infusions... For me, it's the difference between being able to walk around on my own steam or the less desirable alternatives.
Insurance does cover this if it is allowed in your plan. But you must fork over some $$ until you meet your catastrophic deductable. Then it's what I call 'home free'. My own infusions run over $5K per month, and it varies by plan and region. So be prepared and do not be too shocked.

Please don't be shy about asking questions about it all. Also use that blue bar at the top of the forum and use the 'search feature'...type in IVIG and click on all the previous threads on it. I truly hope it helps you and that this helps as well! - j :hug:'s

Hi

I received IVIG, had no issues with it and my insurance thankfully paid for it all. It depends on your policy. I did not have any noxious side effects, and I have issues with just about every drug I take. I just recently had to stop Plaquenil.

MCTD is one of those diseases where the insurance companies do get picky. It is approved and IVIG works, however it is 'off label' usage, so it is best if your diagnosis is one that indicates it is a neuropathy caused by an inflammatory etiology....there are many out there. OR if you have a co-diagnosis of Sjogren's Neuropathy, IVIG is more accepted, however, it is still 'off label'.

I PM'd you. I don't know if you get PMs as a visitor, but, anyway, I tried.

Hi. My firend on the board Roxie gets them every week. If you pm her I am sure she would be happy to give you her thoughts and experience.