Has anyone done IVIG treatments? (Intra Venous Immune Globulin)

Discussion in 'Fibromyalgia Main Forum' started by bluegnu, Nov 5, 2009.

  1. bluegnu

    bluegnu New Member

    I have very low IG numbers, and I've had an immunologist tell me that IVIG treatments can help me significantly. However, after a very, very bad reaction to Vitamin C IV treatments, I'm nervous. (Not to mention that Cigna hasn't approved despite 3 attempts...)
    Just wondering if anyone has any experience?
  2. ruti

    ruti Member

    Hi bluegnu.
    I am getting these Iv's for a few months now. It can be a great gift for yourself. From what I have read and talked to people it can give a real chance for reducing infections especially upper respatory such as throat, sinus lungs and so on. You need to start carefully with a small dose such as 10 gr and with very slow pace of the IV and this is usually the best way to avoid reactions and side effects,
    What is the level of your IGG now? The problem is that the antibodies do not stay in the body and they go down after about a month.
    I started with a level of 1.6 (156) and now before Iv it is 4.5 and 12.5 after. So many people take it for life.
    You need to be more concerned if your IGA level is also very low - some times people like that have a bad reactions as their bodies doesn't recognize IGA!!! there are some products that are better for that such as GAMMAGUARD. My IGA is also very low but I did fine (again - start slow!!)
    With the great chance there are also risks - contracting some not so known virus (although it is a very safe product and it is tested a lot ) I assume you are aware it is a blood product of plasma). There have been some reports of strokes and there was an event like that for a woman in the center I am going to - but it is rare, I spoke to people who get it for years and they are doing so much better.

    They would like it with me to get to a minimum of 600 (6). I am concerned now that they want to stop giving it to me since I don't have repeated infections and my main problems are with intestines.

    Be aware that the treatment is very expensive and very few people get it and clinics and insurence companies are not so happy to approve it to people and if the doctor recommand it for you it does not mean an automatic approval - I had to fight with the system and they approved it for 6 months and I will have to fight again.

    I feel it is a real chance the regular health system is able to provide me for the first time there is something that can really make a difference.
    You need to see the chances and risks.
    Don't be worry about the side effects - it is usually tolarrable and you can start slow and with a small dose. At the first time I had a little fever and headack like you get at a flue shot. After it I didn't feel it at all. I get 20 grams and they start each IV slowly and increasing the rate as it goes. It takes me about 4 hours. Other people there get it much quicker. I do it now about every 4 weeks in the hospital as an out patient. At the beginning they gave it to me every week and 2 weeks so it will build up and not all of it will drop at the same time.

    Let me know how you precede. Feel free to ask more questions if you have them.
    Good luck Ruti