Ivig Treatment For Dysautonomia?

[rmlyonsfamily]

Has anyone received IVIG treatment for dysautonomia?

[sue1234]

I have not, but some on here have. I know ErickainOrlando did it last year, and said she was all well. She checked in once or twice to let us know how well she was doing, and then we haven't heard from her after that. I'm assuming she is out living her life. I'm sure others will chime in.

[anaphylaxing]

This is something I am also very curious about. I know it's a risky treatment and with my allergy history I'm kind of afraid of it, but wonder if it would help.

[mwise]

I wish I could tell you I had a good experience but I can't. I have had 3 treatments and was supposed to have 5. They only gave me 3 and stopped it because of all side effects i experienced. I would never have it again. Enough said. Sorry.

[HopeSprings]

This has been on my radar lately too. From what I understand this is a muddy area with insurance coverage. Based on what others have said, IVIG is only FDA (?) approved to treat certain illnesses and I don't think POTS is one. I think this is more likely prescribed when an autoimmune cause or other "approved" cause is found underlying the dysautonomia. There have been conversations about this on here before - if you're interested search the forum for "IVIG."

Mwise - I recently looked at other people's experiences with IVIG and OMG, it sounds brutal. I thought it was a quick fix kind of thing... umm, no.

[jackiemxoxo]

I had plasmapheresis when I first got sick which is similar to IVIG but less risky because plasma is taken from less donors. I agree that it should only be used for autoimmune causes (which they have a test for- i forget what it is called but it has a long name and is expensive). Also, the closer you get the treatment from when you are first sick, the better the results. I think this is still a controversial issue but can work for some who have an autoimmune cause and get sick because it can reverse the effects of your body attacking itself. In my experience, it was invasive because of the cath they had to put it and it made me feel sick. It made me pool out of control and I stopped by the 4th treatment. My mom thinks it helped but the doctor said later that it did not help because my dysautonomia is not autoimmune in origin. Good luck with finding out info about it but def do your research cause like others mentioned it is not a quick fix or easy procedure.

[rmlyonsfamily]

Thanks guys. I ask, because one of my other children has autoimmune heart problems (he has had Kawasaki's Disease not once, but twice!). Both times he was treated with IVIG. With all that's happened to Kayleigh (there's way more than just the dysautonomia and now a collapsed lung for icing on the cake), the doctors are all thinking there has got to be autoimmune involvement, especially since it's already in the family and typically is genetic. I've thought about asking to do a trial treatment of it and there's just not much info out there.

[dsdmom]

I've been doing ivig for a little over a year now - the first treatment was 5 days in a row, now it's once a month. It has definitely helped my dysautonomia symptoms although has not cured them. But it helps enough that Ithink the few down days a month are worth it. It takes me all day to get the infusion because we go so slowly and then the day after I sleep a LOT and then the day after that I am almost back to normal...

I do get a headache with it but it's not horrific as long as I keep myself treated with tylenol for a couple of days. Although last time I did have to step it up to an imitrex. Other than that not a ton of side effects other than fatigue. I actually do get a little grumpy at some point though which is funny.

If you think your dysautonomia may have an autoimmune component then it might help. My doc got it approved for neuropathy.

[HopeSprings]

dsdmom - THAT is encouraging. I've been hearing how awful the side effects are, but sounds like you're doing fairly ok with it. I have questions. Did insurance approve it for neuropathy? Do you have to take steroids with the IVIG? What symptoms is it helping? Do you think there needs to be an underlying autoimmune condition in order for it to help? How long do you expect to receive this treatment and are the results long term? Thanks. Sorry so many questions!

[dsdmom]

Hi naomi - yes, insurance approved it for neuropathy. Even though I would say it is probably more autonomic neuropathy, my dr put it through as neuropathy. I do take steroids w/ the ivig but really probably only b/c I'm already on steroids (a lower dose) so on the day of ivig I jump up to 30mg. I also pre-medicate with benadryl and tylenol and continue with tylenol for about 48 hours post infusion to help with headache.

I think it has helped with a lot of things - again though it has NOT cured me. I think it's helped w/ standing (so maybe blood pressure stability?). I used to take mestinon every 4 hours and no longer take that. I do have some painful neuropathy and the ivig has definitely taken care of that. sometims I can feel it wearing off and can't wait to get it again. I wear compression hose but I used to HAVE to have them on from the second I got up until I went to bed. Now I can hang out a lot longer (sometimes all day if I'm home) without them. My bowel movements have also improved since being on ivig - I attribute this to the suspected autonomic neuropathy in the digestive tract. I used to have to take miralax every day. I don't take it at all anymore unless i take a lot of zofran for nausea.

I expect to be on this until we figure out something that might help even more! Which means it could be a while....insurance usually approves it for 6 months at a time and then you have to get it reapproved. I am switching insurance in january and am terrified that they won't cover it....fingers crossed!

[HopeSprings]

Thanks for the response dsdMom. It's great you've found something to help your symptoms. It's amazing that it takes cares of the neuropathy pain. I have small fiber neuropathy, so maybe could get this, but with two little kids would never be able to go for all day infusions or take days or even a day to recover from my treatment. And what you describe is similar to what others have said about it. Why can't there be an easier answer.

[rubytuesday]

I have low gamma globulins, do make antibodies but not enough. Both infectious disease doctor and immunologist/allergist/pulmonologist told me I need to take IV Ig for the IV serier then home sub-cutaneous infusions. I have to go back to ID doc tomorrow so guess will 'get this party started'. My luck with holidays and needing ins. auth--may not be til Jan with higher deductibles, co-pays and max out of pockets.

I'm leary as it's a long drive and I'm really sensitive (even to tape they'll use to hold tubing in). It doesn't take much to give me headache that may quickly/with little warning escalate to migraine. Should I take someone with me when I go?

Thanks everybody. I'd be a bonus if it helped with the dysautonomia on the side (but with cooler weather I wouldn't really know as my episodes are so much more freq in summer and they've just up'd my Midodrin for a third time, which could help too).