Ivig
 

Do any of you get IVIG Rxs. If there is anyone I'd like to see what your s/e's are. The way it was explained to me by my doctor was that the new antibodies would fight my antibodies to attach to my nerve endings. I swear it does feel like there is a war going on inside me.

I have received IVIG on/off (mostly on) since 1997. I currently (for the last 2 years) receive a dose for both my immune deficiency and neuropathy.

Side-effects are different for everyone and can even change with each infusion. It's a blood product (comprised of up to 2000 donors per dose), so you can react differently each time. But, by in large, people experience at least a few side-effects with each dose. Headache and flu like symptoms are probably at the top of the list. I have some headache with each infusion, but it's far less then I used to get. I also get weak for a couple days. During the infusion, I get chills sometimes, and my BP drops...both of which are somewhat common. I have also had a severe case of aseptic meningitis from IVIG (in 2007)...so bad that my white cell count in the spinal fluid was over 700 (normal is under 10) and I was hospitalized for a week with full recovery taking over a month. I had to stop infusions for several years. This reaction happened after receiving IVIG for 10 YEARS. Don't think that having received IVIG for a long time means you get used to it and won't have bad reactions...it's just not true and anyone can have unusual reactions after years of therapy. I don't mean to scare you, but it's important to know that with blood products, each infusion is a NEW experience and anything can happen.

Pre-medications are import to help avert the side-effects. Most common are Tylenol, Benadryl, and IV steroids. I use all three of these plus Zyrtec. Actually, it was the addition of Zyrtec that greatly reduced my headaches and chills, and completely stopped the burning lips/mouth I would get on day 2 or 3 after the infusion. I take the pre-meds right before the infusion except the Zyrtec, which I take the day before, day of, and for 2-3 days after the infusion. I can't say enough about how the Zyrtec has improved my IVIG experience each month.

The other thing that is VERY important to keep side-effects at bay is hydration. I drink plenty of water & Gatorade or pure Coconut water (which is FAR better for hydration than either water or Gatorade) before, during and after the infusion.

IVIG works by modulating the immune system, but the actual mechanism of action for it's affect on neuropathy is unknown. There is assumption that it goes after the errant antibodies that are attacking the nerve endings. So your description of a war going on inside, isn't far fetched. And it's this war of antibodies that create your side-effects.

What type of side-effects are your experiencing? Are they showing up during the infusion or 2-3 days after? What are your pre-meds?

Thanks en bloc, I do hydrate before and they give me 1/2 bag of saline before and after. We started that after I had gotten a really bad headache from them once. We also run it really slow. I have taken different premeds during the last year and a half. I started with the Tylenol and Benadryl. I can't remember why we stopped the Tylenol. I stopped the Benadryl because it puts me to sleep and I actually felt like I couldn't drive home. My husband was taking me to and from but we can't afford for him to do that. I was getting steroids with my Rx for awhile. I developed high b/p so we stopped those. It's a good thing I knew the steroids could cause it because their answer was a b/p med. As soon as I stopped the steroids it went back to normal.
The last few months of Rxs I have been getting really nauseous. I have Zofran for that but it makes me feel lousy. I'm really sensitive to meds. So this time we tried Pepcid and it seemed to help a little. I don't know how to describe what I feel when I get them. It's like my nerve endings are going crazy. I do feel the flu symptoms this time and I haven't had that reaction in a while. My legs are really achy and the bottom of my back hurts. I thought maybe I had a fever but I don't. I had the Rxs on Tuesday and Wednesday so I'm hoping this is all gone by tomorrow.
I will definitely try the Zyrtec next time. Thanks for the suggestion.

The Benadryl is very important, but yes, it makes most people sleepy. Actually, sleeping during the infusion is very good for helping with reactions. If you cannot drive herself to/from after taking it, then maybe they would consider doing the infusions at home. The cost is considerably LESS (thousands less, actually) for home infusions, so most insurance companies jump at the idea. This way you could take the bendaryl and have a better experience (both with less side-effects and more sleep/rest).

The Zyrtec needs to be taken the day before, morning of infusion, and for a couple days after. Of course, there is no sleepiness that occurs with Zyrtec.

The other thing that can be considered if you just can't tolerate your side-effects, is to change the brand of product. What brand are you taking now?

Good advice... I have only one caveat....

Zyrtec makes me a total zombie. It is different for different folks!
I cannot stand it. Even a 1/2 tablet makes me useless and sick feeling.

Sorry to jump in... Can u have Ivig for an idiopathic neuropathy?
What if ur damage is due to physical trauma ( unconfirmed by Dr , but I know it)can u still receive ivig and would it be helpful?

Does ivig allow healing or just stop progression!

I'm at my wits end too and although it has prob been discussed before, i would also be keen to know whether anyone has been treated for small fibre neuropathy with ivig and whether it helped their SFN and in what way?

MrsD is correct...different folks have different responses to medications, even OTC ones like Zyrtec. You might want to try the Zyrtec on a day not getting IVIG, just to see how you tolerate the medication. If all ok, then try it in conjunction with your infusion.

IVIG has been used in many cases of SFN with good results. If you have a positive skin biopsy, then you should not have too much of a problem getting approval for it's use. However, whether it would be as helpful for traumatic type of neuropathy vs autoimmune or even idiopathic, I don't know. But I think trying it would be logical if all other treatments have failed.

In cases of autoimmune and some idiopathic (since the cause is unknown), the IVIG actually heals the nerve to some degree, because the fiber density actually increases. This has been documented by repeat skin biopsy after a course of treatment with IVIG. Most patients receiving IVIG for SFN, get relief in regards to pain, and burning sensations...and sometimes the electrical shocks (I know some people that have report it helping this, but not everyone).

Personally, my neuropathy is past point of healing, so we only expected to slow progression (which it appears it is doing). However, I can report that my pain level is "a little" better for 3 of the 4 weeks between infusions. I know this, because that last week right before my next infusion is horrible with pain. Overall, It does NOT take even half of my pain away (like I said my damage is permanent), but any improvement is something and slowing progression is very important to me.

Thanks for the detailed reply en bloc :-) apologies its on back of another's. I have positive biopsy, but live in the UK. Also have one autoimmune already so believe strongly this is autoimmune.. On speaking to my neuro he says that the panel approving NHSfunding for this will want to know how iimprovement can be measured. Also said they may just try 1 go of it. They just don't come across this or use ivig for this and its just not approved in the NHS guidelines for SFN.
I'm looking for ' evidence' to back up the case that ivig helps SFN but there is hardly anything online.