Shelly in VA Posted August 20, 2013 Share Posted August 20, 2013 If anyone has experience with this, I'd appreciate your input! My ds16 has been having some neuromuscular issues, which the orthopedist, general practitioner, PT, and neurologist were all sure was Charcot Marie Tooth. After some tests (bloodwork, nerve conduction study, EMG and a spinal tap), the CMT is still a possibility, but CIDP is also a potential diagnosis. If it is CIDP (Chronic Inflammatory Demyelinating Polyneuropathy), IVIG may be an effective treatment. I am concerned about some of the possible issues (it is a pooled blood product that is given intravenously), especially since we aren't sure that CIDP is the cause of the problems, but we have decided to try it, b/c it seems wrong to avoid something that has the potential to alleviate a lot of the symptoms he is having. I know IVIG is given for a host of conditions, so I'm not necessarily looking for input on treating this disorder. What I am wondering is what to expect from the treatment. Is it uncomfortable when it is administered, and how severe are the side effects? Also, if anyone has experience with this for CIDP, what sort of improvement should we expect to see? Our neurologist is fantastic, and he has been incredibly supportive and informative throughout this process, but I'm looking for any input people who have had this can give. Thank you!! Quote Link to comment Share on other sites More sharing options...
InterestingCase Posted August 20, 2013 Share Posted August 20, 2013 I have a family member who had a course of IVIG and experienced tremendous improvement--to the point of remission for the past few years. It was an amazing help to us. This being said, you need to be fully informed and ready to deal with the headaches and other side effects that might occur. You might want to view this site (it includes a forum for discussion): http://www.gbs-cidp.org/ They have also started treating CIDP with stem cells, but I believe this is only for adults. If other treatments do not work, the stem cells of the patient are harvested and used to heal the body (no worries about stem cell ethics, here). There have been fantastic results with this treatment as well. Quote Link to comment Share on other sites More sharing options...
Shelly in VA Posted August 20, 2013 Author Share Posted August 20, 2013 Thank you! Quote Link to comment Share on other sites More sharing options...
wonderchica Posted August 20, 2013 Share Posted August 20, 2013 My dad gets this once a month for dermatomyositis. A nurse comes to the their home, I think it's for 3 or 4 hours? She checks his vitals periodically during the treatment. He hasn't complained of any discomfort during. For 2-3 days after Dad feels tired and a little flu-like. He feels much better after that period. It hasn't cured his illness, but it isn't expected to. He feels it's effective and worth the hassle. Quote Link to comment Share on other sites More sharing options...
mom2scouts Posted August 20, 2013 Share Posted August 20, 2013 I've had more IVIg infusions than I care to count. It really wasn't bad at all. My first infusion was in a doctor's office, but for all the others I had a home health nurse come to my house. I took Bendryl about 30 minutes before the infusions and, since Benedryl knocks me out, I slept through much of it. It usually took about 3 hours for each infusion. It wasn't painful at all other than putting the IV in and the only side effects were feeling a bit tired and "off" for a day or two after. Sometimes I had a mild headache. Quote Link to comment Share on other sites More sharing options...
Shelly in VA Posted August 20, 2013 Author Share Posted August 20, 2013 Thank you, everyone! Quote Link to comment Share on other sites More sharing options...
LNC Posted August 20, 2013 Share Posted August 20, 2013 I had massive side effects, but I was pregnant each time. Premedicated with zofran and benadryl. I had it inpatient over 24 hrs more.bc of.pregnancy and side effects. Quote Link to comment Share on other sites More sharing options...
LNC Posted August 20, 2013 Share Posted August 20, 2013 I had massive side effects, but I was pregnant each time. 2 pregnancies I think every 3rd week or everyother. Premedicated with zofran and benadryl. I had it inpatient over 24 hrs more.bc of.pregnancy and side effects. Quote Link to comment Share on other sites More sharing options...
blondeviolin Posted August 21, 2013 Share Posted August 21, 2013 Besides irritation at the IV site and blown veins, I didn't have any side effects with IVIG. It was a fairly mild treatment for me. Quote Link to comment Share on other sites More sharing options...
BlueTaelon Posted August 21, 2013 Share Posted August 21, 2013 My oldest was on IVIG, the side effects were terrible flu like symptoms and switching brands didn't help, we switched to weekly SCIG and all the side effects went away. She was on it for 5 years and 18 months of it was IV, wish we jumped to SCIG sooner. It is a blood product and takes 10,000 to 50,000 people to make up a batch then it takes about a year to process if I remember right (check out the mag IG Living if you want details, they did an article on it about a year ago and call Baxter for a free subscription to the print version). I was terrified of her going on it because of the whole HIV thing in the 80's and I was worried about something similar coming down the pipe so to speak but that stuff saved my daughters life and I'm glad I chanced it. I'm now a plasma donor to repay into the plasma pool to help others. Its funny, my first visit to the plasma center they gave me the promo stuff and as I was looking though it and going "Hey! We know that family!" it was a good reminder of why I'm doing this even though my daughter is no long on IG therapy. We just celebrated 2 years of remission from CVID:) Quote Link to comment Share on other sites More sharing options...
Momling Posted August 21, 2013 Share Posted August 21, 2013 I've been going through some similar issues and still looking for a diagnosis. All I know about IVIG is that it's extremely expensive. Have you talked with your insurance yet? I understand that a single infusion is about 8000$. Quote Link to comment Share on other sites More sharing options...
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