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.

I know it's been awhile since this thread has been active, but I'm also looking into IVIG and Ketamine. Was wondering if you ended up deciding/how things are progressing for you. Were you able to get your insurance to cover anything (if you did proceed with IVIG or Ketamine).

I am only 24, and about a year into CRPS in my foot. I can't do any more nerve blocks so I am trying to look into other options... there aren't even that many choices but it can all feel so overwhelming... glad for any information you can provide (or anyone else can, for that matter).

Lots of hugs!!!

Dear Sarah,

IvIg is an acronym for "intravenous immunoglobulin type G," which is G tpe antibodies that protect us from viruses and bacteria. The G type antibodies are obtained from the blood plasma of 1,000 donors. It is a substance of which healthy bodies make plenty. You can have a blood test to determine your own levels of Ig (immunoglobulin-G), as well as the other sub-classes of immunoglobulins. My levels of most immunoglobulins were awfully low. My daughter, who has MS, had similar low levels.


The intravenous part, means that the Ig is infused into a vein. My doctor is an infectious disease specialist and runs his own private clinic. He prepares all substances for infusion under a sterile hood. And, he uses a small butterfly needle inserted into veins in the back of the hand or inside arm just above the wrist. This good doctor insists upon performing intravenous infusions in the farthest extremity. If you start inside the elbow, where phlebotomists usually draw blood, then there are not many alternate routes left. For those requiring regular infusions for a long time or even for a lifetime, it is important to conserve veins!

Ig is not a drug. It works better than all the drugs and surgeries and TENS units put together.

Ig must be infused at least every 21 days. It takes 2 to 2 and 1/2 hours. Working with my doctor, we discovered that 20grams every 21 days is what both my daughter and I need to stay well and reduce or eliminate pain.

IvIg begins to wear off after 2 weeks. Going longer than 3 weeks between infusions is not advisable for the immunocompromised.

As for low immunity, I wonder if everyone with an autoimmune disease has low immunity and could benefit enormously from receiving IvIg. I do know about studies done quite a long time ago, as well as more recently, showing the efficacy of IvIg for many autoimmune disorders. You can search PubMed, or simply google IvIg for CRPS or IvIg for autoimmune disorders.

I suppose there are other doctors that will do it. It can be done by a home nursing service too, although I have too much experience receiving intravenous treatment and seeing other people receive it as well, to recommend this route. It is best to always have a doctor as close as the next room. I would venture a guess that any place that gives chemotherapy via Iv could also put Ig into a vein.

My doctor uses Privogen. It is a superior Ig product. If research various brands of Ig, you will find that some are made with glucose. These types cause trouble. Privogen is made with saline and is the safest Ig product my doctor knows. He has been infusing Privogen brand Ig without any problems for a very long time. I recommend googling Privogen and reading more about it.

Eight months ago I was taking the following drugs: Neurontin 3600mg daily (generic name: Gabapentin - I can't take it due to the gluten added into the generic form); Cymbalta 120mg daily; Methadone 10 mg daily; Klonopin 2mg at bedtime. I used a lot of Lidocaine patches too.

I'm 57. CRPS began at age 23 and spread throughout my body. After about 8 months on 20grams of IvIg every 21 days, I am well on the way to being drug free. I no longer take Methadone or Cymbalta. Neurontin is reduced to 300mg am and noon and 400mg at bedtime. Klonopin is at .5mg at bedtime. I'm aiming for another week or two to wean off of the last drug doses. I have much less pain and way more energy. I'm walking quite a lot. I used to use a scooter and don't even use a cane now.

I wish you good healing. ambika

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