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.

In my experience, which involves living with whole body CRPS for 34 years, IVIg does work. It took 8 months of 20grams Prigoven infused every 3 weeks.

The thing about study size is that only big pharmaceutical studies have the cash, or else government funding (which they then turn a profit on), to run big studies. Pharmaceutical companies are not able to patent IvIg. These companies make money by selling patented substances. And, they are not going to bother studying anything that could displace the drugs they make and patent.

So far, healing from an autoimmune disease like CRPS or CRPS or MS or Lupus, etc. has not occurred via symptom managing (pain killing) with drugs and immune modulation (really immune system killing) drugs.

IvIg has done the most for me. Iv glutathione and lipoic acid helped too. I don't bother with lipoic anymore. I get glutathione weekly and IvIg every 3 weeks.

Wishing you good healing. ambika

Dear One,

It works!

IvIg, Privogen brand only, at 20grams every 21 days, cured the severe RSD/CRPS I lived with for over 30 years. I am medication free, pain free, and without the constant involuntary muscle twitching and cramping.

I also receive Iv Glutathione, because testing showed that I was not producing any. It helps a lot, but the IvIg is what took the disease away.

It is important to have a good brand of IvIg - one made without sucrose. My doctor has used Privogen for many years without any trouble for any patients.

It is also important to be tested for IgG and subclasses, as well as IgA. The IgA levels are important, because people with low IgA levels are unable to tolerate IvIg treatment.

I wish you success in healing!!!!

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