Have you tried IVIG for CRPS?
 

Has anyone tried IVIG for CRPS? I read the article discussing the double blind trial in England of 13 patients with CRPS who received IVIG and had some good results. I was wondering if anyone in the US has tried this? If you have, did you see any decrease in CRPS pain/symptoms? How much did it cost? Thanks!

I'm in the US and am 8 weeks into IVIg for the treatment of Myasthenia Gravis but have had amazing results with regard to what I've always considered my primary disease process which is severe bilateral RSD (they call it CRPS these days.) Diagnosed in 1999, Surgical Sypathectomy in 2001 on left side when necrosis threatened to take my arm.

IVIg is absolutely amazing! I can't say enough about the results I've felt! This treatment has improved everything from the RSD, MG (yea!!) Diabetes, Fibro, and even my hypertension. The only thing that seems to remain the same is Asthma but I'm not looking a gift horse in the mouth!

I've had minimal side effects, headaches, and dermatitis on hands. No renal, or liver malfunction at all at this point. The pain in my arms has gone from an 8 to about a 5. This is amazing! Absolutely amazing! It has given me so much of my life back. I may not be 100% yet but who knows what the future holds.

It is expensive at $10,000 every 21 days for me but, my husband says he'd pay 10X that amount to have me back so I'm going to continue for as long as I can. Insurance pays for a large percentage and we will need to figure out the rest. In my opinion, you can't put a price on being able to hold your children and hug your spouse. You can't put a price on being able to really live your life...

Wow thank you so much for sharing that! I really appreciate all the information. I had one quick question. You mentioned that your insurance pays for a large %. Is that because you also were diagnosed with MG? As in they probably wouldn't pay for it if you just had RSD?

Hi everyone
I have never heard of ivig treatment. It sound like it is having some really profound results. What is this treatment and what type of dr administers this treatment. I have tried everything including ketamine and have been out of treatments (besides taking meds that I would prefer not to take) and lost all hope after the ketamine came to crossroads that was unexpected... I would love to hear more about this treatment and thank you for posting a thread on it.
Sarah

Hi Sarah,
So sorry to hear that the ketamine has not worked for you. I am actually looking into both IVIG and Ketamine and trying to decide which one to do since they both are extremely expensive.
So if you go to this link: <http://www.rmrsd.org/Auto-immuneResearch.html>
and then scroll down to the bottom of the page where it says "Immunoglobulin Study on CRPS" click that and you can read the study done on it. I hope that helps! I was just wondering what happened with you during the Ketamine infusion?

My pulmonologist told me about that exact same study. Apparently that is either the only or one of the only studies done yet. I'm kinda skeptical just bc thats such a small study. I did some reading up on it on forums & got the impression that it can be helpful during the beginning of RSD & can reduce pain a few points, but not a miracle & doesnt work once you have had RSD long. I hope I am wrong & that it works. I posted about this too, maybe you can find others responses on there. Hope it works for you.

How long are the infusions? Are they done in-patient or out? Can I ask about the measure of pain relief and how soon you achieve it? Also, is there a list of doctors/hospitals using it? I have always read good things but don't know a tremendous amount about it.

Liz

Hi Liz,
I don't know a lot about how it is done since I haven't had the consultation with the Neurologist yet who my pain doc referred me to. I do know that it is done by Neurologists and Rheumatologists. My Rheumatologist suggested it as well since he does it for a lot of his patients with autoimmune diseases. I think the biggest factor is that while it is done frequently for people with autoimmune diseases, we are not classified under that so FDA does not approve IVIG for CRPS which means if you were to find a doctor to do it for you, you would probably have to pay out of pocket. Hope that helps a little.

IVIG questions
 

My son has suffered with CRPS in both knees since age 14; he's now 21. We've tried everything, with 10-day ketamine infusion in September being the most recent - all to no avail. His doctor is willing to try the IVIG treatment with him but Nick's hesitant to get his hopes up again only to be dashed by another failed treatment. Do you receive the treatments in the hospital? How long is the infusion? And what, if any, preliminary tests have to be done prior to receiving treatment? Thanks!

Can I ask, when you did the ketmaine infusions did you get rid of all other meds including pain medication? My daughter had MANY infusions and eliminating all other drugs made a very dramatic difference.

Liz