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

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!!!

Ivig
 

I had ivig ,,,I have full body rsd and small fiber neuropathy in my leg from the rsd, my insurance paid for most of it. It was done in my neurologist infusion suite, takes about 4-6 hours. I had it done for 4 days in a row once a month for 5 months. It didn't do anything for me. Like everything else....I am really hoping the tDCS works!,, oh and you may need a cardio Clarence..cause the ivig is thicker than tour blood so they want to make sure your heart is ok,,,

Debbie

Iv Ig for CRPS Worked for Me!
 

I'm 57 years old and have lived with CRPS since age 23. It began in the right foot, spread to the left foot, up both legs, to hands, arms, shoulders, sacral and thoracic portions of the torso, etc. Before IvIg, and Iv glutathione too, I took 3,600mg Neurontin(Gabapentin), 120mg Cymbalta, 10mg Methadone, and 2mg Klonopin a day. For about 8 months, I have been taking 20grams intravenous immunoglobulins (Privogen) every 21 days, and, after a saline flush, intravenous glutathione. I had been taking both glutathione and lipoic acid intravenously for about a year and a half.

I started with just lipoid, daily. It helped. Then I added glutathione, which helped much more. It was the IvIg that helped most. Now, I do not take any Methadone. I do not take any Cymbalta. I take .5 Klonopin at bedtime and plan to eliminate that soon. I take 300mg Neurontin morning and noon and 400mg Neurontin at bedtime. I have less pain and more energy. I'm a 'walkie' now - no longer a 'wheelie.' I'm near the end of a process of slowly eliminating all medications. Even though studies have been done showing efficacy of IvIg for CRPS and other autoimmune diseases, more need to be done. More people need to know about the treatment and demand that insurance cover it. In the end, it does not cost more than all the other CRPS 'therapies.' To get this therapy covered is going to take a lot of noise from a lot of people with MS, RA, CRPS, Lupus, Alzheimers and so many other autoimmune diseases. (IvIg was as miraculous for my daughter with MS as it was for me with CRPS). Unfortunately for so many of us, and more of us all the time, IvIg is not something drug companies can patent. So, the money from Big Pharma is behind drugs that don't work and not ever going to support studies of
IvIg for anything.....And just now I see debbiehubb's post below. I'm going to write to her now to ask what insurance she has that pays for IvIg. That is something I have not heard of! Wishing you good healing. ambika

IvIg worked for me
 

:oDear 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

RSD for 34 Years And It Worked for Me
 

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

Iv Ig for CRPS Worked for Me too!
 

Dear One,
I am elated to hear that you have had success with IvIg treatment. Any safe way to lower or eliminate the pain is a wonderful, precious thing. I am 57 and have lived with CRPS spread throughout my body for 34 years. I've had 20grams of Privogen (a superior Ig brand) given intravenously every 21 days, as well as intravenous glutathione. In a week or two, I expect to be off all pain relieving medications. I used to take 3600mg Neurontin daily, 10mg Methadone daily, 120mg Cymbalta daily, and 2mg Klonopin at bedtime. I also used lots of Lidocaine patches. Now, I do not take Methadone or Cymbalta. I have not used a Lidocaine patch in months. I take 300mg Neurontin in the am and at noon and 400mg Neurontin at bedtime. I take .5 mg of Klonopin at bedtime. By next week, I plan to drop the .5 Klonopin and another 200mg Neurontin. Soon, I expect to be drug free. I'm already scooter and wheelchair free.

I receive treatment at the private clinic of an infectious disease specialist. Before treatment, it is necessary to have a blood test to determine your own Ig levels, as well as Ia and other subclasses of antibodies.

Good luck. I wish you and your son good healing. ambika

There was no funding to tale that trial any further so I wouldn't put much stock in the results from 13 sufferers and when I asked the Doctor in charge if he would be prepared to spend 3 - 4 hours for the chance of £500,000 in research funds he said he didn't need the money unfriggingbelievable

Success with IvIg(Privogen) and Glutathione for CRPS!!!
 

After more than 30 years with CRPS that began in right foot and spread throughout my body, I have finally recovered. Testing showed that I was not producing Glutathione. Testing also showed extremely low IgG and subclasses. Intravenous glutathione treatment helped but did not reverse or stop the disease. IvIg helped much more. Once I started getting 20 grams of IvIg every 21 days, I improved rapidly. I used to have constant involuntary muscle twitching and cramping of legs, feet, fingers, hands, memory problems and other body areas - not to mention the severe pain, periods of swelling and sweating and color changes, etc. I'm no longer in pain! No more involuntary muscle twitching or cramping either. If I am on my feet too much, then they hurt. But, they recover the next day. I am off all medications, which were: Neurontin 3600mg per day, Cymbalta 120mg per day, Klonopin 2mg at bedtime, Methadone 5mg twice a day. I'm drug free and pain free!!!! My doctor says that research results seem to indicate that about 50% of people with autoimmune, neurodegenerative disorders are able to be helped with IvIg.

It is too bad that insurance companies will pay for drugs that don't work AND have undesirable effects (the marketing term for these is "side effects") but will not pay for IvIg.

IvIg must the right brand, such as Privogen, the brand my doctor has been using without any problems for many years. Any brand of IvIg that uses sucrose in its mixture is dangerous.

Before receiving IvIg treatment, patients should have a blood test for IgG and subclasses plus IgA. Measuring IgA is important, because people with low levels of IgA are unable to tolerate IvIg therapy.

Other countries are using IvIg. In Canada, for instance, the government pays for people to receive IvIg treatment. The MNI, the Montreal Neurological Institute, provides IvIg treatment (Privogen)to people with Multiple Sclerosis and other autoimmune, neuromuscular and neurodegenerative diseases.

PS. Re Love Family Pets: I love my Bouvier des Flandres dog!!!

It works for me!! No More CRPS after 30 years!!!
 

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!!!!

CRPS Works for About 50%...at any stage or time
 

Dear One,

After 30 years with severe CRPS, I am pain free and medication free. IvIg, Privogen brand, 20 grams every 21 days, is what did it.

There is much research evidence showing that approximately 50% of people with neurodegenerative disorders are able to be helped with IvIg. Not all of the research has been done in this country.

There is so much evidence of IvIg's efficacy, that the Canadian government pays for patients to receive IvIg therapy. My daughter, who has recovered from severe MS with IvIg therapy (Privogen brand), receives free IvIg at the MNI, Montreal Neurological Institute. The Canadian government only pays for unproven therapies or medications.

If you have low IgG levels and do not have low IgA levels as well, then it may be worth finding out if you are one of the 50% who can be helped with IvIg therapy.

Wishing you success in healing!!!

I too want to find a doctor close by to try the IVIG treatment, with RSD I was also diagnosed with sarcoidosis which IVIG is used to treat it.

Yep I would like to try this aswell. Just trying to find a dr in my area willing to try.

The Amount and Brand and Length of Iv Ig Treatment Matter!
 

Dear Debbie,
I wonder if you know the name of the brand of Iv Ig that you received, as well as the amount. I started with 15 grams of Privogen every 21 days. After I began receiving 20 grams of Privogen brand Iv Ig every 21 days, it took about 6 months to work. After 35 years living with RSD/CRPS that had spread throughout my body, I am now free of pain and other RSD/CRPS symptoms. I still feel rotten on hot days. I need to wear soft but supportive shoes and ration walking upon hard surfaces or for extended periods. At least I can tolerate shoes and socks. And, so long as I don't overdo on my feet (where CRPS began and was the most advanced and painful in my body), I live pain free and without any of the medications I once desperately needed to manage neuropathic pain, cramping, dystonia, involuntary movements, etc. My 32 year old daughter had advanced MS. She was in a wheelchair and could not see well enough to drive or read. She also received 20 grams of Privogen brand Iv Ig every 21 days. Now, she reads, drives and walks again. Her doctors can no longer tell by physical exam that she has MS!!! I have to wonder how important it is to receive enough Iv Ig for a long enough time. I KNOW that Iv Ig levels fall off rapidly after 2 weeks and that some people may need infusions every 2 weeks. For me and for my daughter, a 4 week interval was too much. And, I also KNOW how important it is to use a well formulated brand of Iv Ig. I KNOW that brands of Iv Ig formulated with sucrose are not as safe as those formulated with saline, like Privogen. My doctor is an infectious disease specialist. He has been giving Iv Ig treatments for 20 years and has never had an adverse event using Privogen. I'm interested that your infusions took 4 to 6 hours. I continue to get them and they take 2 to 3 hours. I always feel sad when I hear about someone like you who most likely did not receive enough "juice" for a long enough period of time to make the needed difference. My daughter and I continue receiving the amount (20 grams) the time interval (21 days) and the brand (Privogen) that work to keep us well. I wish you good healing!

Ambika - I have sent you a Private Message. take care,

Can I just say that I'm following this thread with interest because my pain doc has promised to look into IVIg for me.....
Ambica - you've given some really valuable and interesting information about this so thank you :) but you are posting some of the same information about your experience in nearly every post and it is getting a little repetitive in places!
No offence intended at all, I'm sure people are reading the thread and realise how passionate you are about this subject, but I am starting to skip parts of your posts because they seem to be the same information - and obviously that's not good because if there is something new I'm going to miss it.

Take care everyone and I hope you have a good day today :)

Bram.