bellajulz Posted November 4, 2009 Report Share Posted November 4, 2009 I'm scheduled to do IVIG this next monday and Tuesday, it's basically a last resort to help me with my pots. Has anyone had any luck with this or offer any information,advice or experience with IVIG. Anything will help as I am a bit scared... Thanks in advance.. Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 4, 2009 Report Share Posted November 4, 2009 I'm scheduled to do IVIG this next monday and Tuesday, it's basically a last resort to help me with my pots. Has anyone had any luck with this or offer any information,advice or experience with IVIG. Anything will help as I am a bit scared... Thanks in advance..Hey Bellajulz-I have NOT done IVIG, but it has been recommended to me. Are you doing it for POTS exclusively? My allergist/immunologist has spoken to me about it because my IgG is so low- 500 (750-1,600 normal.) Apparently IgG plays an important role in immunity. I have heard that it is best tolerated if given very slowly. It can cause headache, fatigue, and nausea. I am very nervous about it because it is comprised of donor blood and I fear that my body will reject it and go into anaphylaxis. I have MCAD. If you don't- I'm sure you will tolerate it just fine. Please let us know how it goes. I'll be sending good thought your way.Julie Quote Link to comment Share on other sites More sharing options...
arizona girl Posted November 5, 2009 Report Share Posted November 5, 2009 Bella, Did you get into see Dr. Levine and is your insurance going to pay for it? Love to hear about your appointment. My UHC insurance took forever to decide it was experimental and turn me down for treatment. Looks like I'm going to have to fight for it.What do you think about Ivig and your diagnosis?AG Quote Link to comment Share on other sites More sharing options...
bellajulz Posted November 5, 2009 Author Report Share Posted November 5, 2009 Hi, Macks Mom, My only diagnosis at this point is POTS, so the IVIG is a last resort at helping me function more normally. I was told my day would consist of 6-8 hrs of treatment for 2 days as outpatient then in my home after that for 2 days every month for 6 months of it and go from there. Thanks and good luck to you too!!!AZ Girl, I had been meaning to update you on my doc visit with Dr. levine, he was very knowledgeable and after all my labs and cmg came back normal he ordered up the IVIG, he believes its worth a shot. He also got my insurance to approve the mayo clinic for autonomic workup, which had been previously denied. I will keep you posted on anything new. How are you? Quote Link to comment Share on other sites More sharing options...
MNsue Posted November 6, 2009 Report Share Posted November 6, 2009 I have been on IGG for over 2 years. I can say that initially it was difficult, but it helped stop the progression of my neuropathy. Hopefully, you won't have a hard time, but be prepared to need extra help after your IV just in case you have the fever or headahes. I am now on a sub Q form that I give myself 5x per week, and I don't have as many side effects. I think many people who have a hard time give up on treatment. I remember that I almost did, but am thankful that my Doctor found a good alternative for me. I saw another woman who had worse side effects than I did( and there were not many) and she was so much better a year later. She did not even look the same. Best of luck. Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted November 7, 2009 Report Share Posted November 7, 2009 Bella -I would love to try IVIG. I had this done many years ago for Guillain Barre. I don't function normally at all with my POTS. How many hours a day can you be up and functioning? When do they consider it worth it to try it? I have very little life. I just tried to clean my shower a little and am so ill...eI am in bed. Thanks,Erika Quote Link to comment Share on other sites More sharing options...
bellajulz Posted November 8, 2009 Author Report Share Posted November 8, 2009 I do not really know much about the ivig, just that all my other tests came back negative as to why I have pots so my new nuero believes it's worth a try... other then that I dont have any other basis for it... I will post more after I have it... Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 8, 2009 Report Share Posted November 8, 2009 I really can't wait to hear about it. Please report back! Best of luck tomorrow-Julie Quote Link to comment Share on other sites More sharing options...
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