IVIG?

[acer 455]

Just want to know how well  IVIG works for repairing nerve damage?  My sense of smell and tatse has been reduced tremedously and my rhummy thinks it was due to some kind of sjs invovement or fibro. Want to know if anybody had any good or bad experiance with IVIG and if it repairs nerve damage. Maybe it will repair my sjs CNS also have no feeling in urination either.

[warmwaters]

Not sure how much it helps with nerve damage - I did it for overall Sjogren's issues, with the hopes of improving energy. My primary complaints are fatigue, joint and muscle pain, IBS, and then the dry eye/mouth issues.

I had a bad experience with the IVIG - had a reaction to the blood product on the third day of the infusion. This was followed by a deeper exhaustion than I had before, which has lasted for 3 months.  However I know that several people here have had really good experiences.  Search on the site for IVIG - there are a number of useful discussions about it.

[rnathans]

I do not think it repairs nerve damage but it slows progression. I have not gotten any worse on it which feels like progress to me. I can also feel a difference when it is near time to get it again. I get a lower dose than the standard, infused very slowly. It is important to get lots of hydration and premeds like benedryl and steroids.

Warm waters, I am surprised they gave you IVIG as it is not usually approved for those symptoms. It is given for some neuropathies as well as some immune deficiencies. That is very different than our overly revved up autoimmune system.

[Piebird]

I dont think anything repairs nerve damage

[gurs]

Im with warmwaters...had the same type of reaction. Their are alot of people that have great results, there is also alot of different brands etc.
The only thing I can really note is that you have to have the infusion run VERY SLOW....double, triple, the normal run time. I cant believe how sick you can get when they run it too fast.

It didnt seem to help much with my neuropathy? does anything? Im going to try Rituxan again soon if I ever can get healthy enough.

Gursie

[gardenlover]

What is IVIG?

[Ark mom]

While I have not yet had an IVIG treatment, I have had some nerve involvement, perhaps only inflammation/irritation of peripheral nerves and not much permanent damage so far.  I have had things like burning pain on my skin, painful tingling in my limbs, face, neck, etc., carpal tunnel symptoms, and lots of weird sensations (bugs crawling, vibrations, dripping water down my legs).  I must say that treating my sjogrens has caused a 90% improvement in my symptoms.  Peace and hugs!

[Linda196]

@ Gardenlover, IVIG is intravenous immunoglobulin, a blood product that comes from plasma.

[gardenlover]

Thanks Linda, could you explain the treatment a little?  Thanks

[warmwaters]

I also have immunoglobulan deficiency, specifically IgA and IgG. My doctor has done a fair amount of off label treatment with the IVIG for Sjogren's with some good results.  Just another great topic for research, I guess!

I do not think it repairs nerve damage but it slows progression. I have not gotten any worse on it which feels like progress to me. I can also feel a difference when it is near time to get it again. I get a lower dose than the standard, infused very slowly. It is important to get lots of hydration and premeds like benedryl and steroids.

Warm waters, I am surprised they gave you IVIG as it is not usually approved for those symptoms. It is given for some neuropathies as well as some immune deficiencies. That is very different than our overly revved up autoimmune system.

[irish]

I have been getting IVIG infusions since Nov 2006. I get 80 grams of privigen one time a month. It takes close to 6 hours to infuse this product. I receive it for my myasthenia gravis, which is an autoimmune neurological disease. One has to have IVIG ordered by doctors for specific reasons. There is a committee who approves the administration of these products to see that they are not given indiscriminately as there are certain diseases for which IVIG is approved.

Many times doctors can get approval for neurological and other issues with proof of other treatment failure. I also have low t-cells and get infections very easily. The IVIG helps with this. I have sjogrens with many different symptoms that sort of move around. I have lost hearing in one ear and have an enormous amount of sinus, etc issues. I have neuropathy and also have had problems with my "smeller" for many years. I can't say that IVIG has helped my sinuses, sense of smell and dryness. I seem to be getting more dry as time goes by. I have heard that IVIG does't help sjogrens all that much. I do believe that is something that is very individual.

Have you asked about imuran or methotrexate?? Cellcept. There are other drugs out there that help. I can't take these drugs due to my low t-cell levels. Good luck. Irish

P.S. IVIG is very expensive. Mine runs about $ 6000 monthly and is paid by my insurance. I am very lucky. I autoimmune husband who also has low blood levels just started IVIG last fall and gets a smaller dose and his runs over $3000 month. We are a high maintenance family.  Good luck! Irish

[LB]

I know this is an older post, but I just wanted to clarify if people are searching on here for IVIG info... IVIG itself doesn't cause the nerves to grow back, but when you stop the Sjogren's from injuring the nerves, which can happen through a variety of mechanisms, some nerves can repair themselves in a healthy environment.  A good example is small fiber nerves. 

I had severe sudomotor (autonomic) and sensory small fiber neuropathy due to Sjogren's.  I went on IVIG and my small fiber nerves grew back after a few months.  Small fiber nerves are constantly regenerating, but they can't keep up when Sjogren's is attacking them, so the IVIG helps present the Sjogren's from attacking them.

I went off the IVIG and the nerve damage returned.  I went back on it again, and now we are waiting 1 year before repeating the testing to see if the nerves grew back again.  I think so, because I don't feel the sensory small fiber nerve pain anymore.

The small fiber nerves cannot be tested for on an EMG/NCS study.  You need a good clinical exam looking for numbness, and then a QSART or skin biopsy to look for the sudomotor/autonomic nerve fibers.  There are two types of skin biopsies - one that only looks for sensory nerve fibers, and one that looks for sensory and sudomotor/autonomic fibers.  If you are getting a biopsy, might as well get the one that looks for both.

If you do a search on PubMed.gov, there are lots of journal articles talking about the benefits of IVIG for Sjogren's related neurological complications - not just small fiber nerves.

Hope this info helps.

[gurs]

LB..

May I ask why brand of IVIG your taking? Just curious?

Gursie