I have been successfully getting IVIG infusions every four weeks. I need to change the pattern next month and wanted to know if others have any recommendations as to wether it is better to make the next infusion three weeks or five weeks?

You're putting yourself at risk by going out to 5 weeks, because the IVIG will be pretty much gone from your circulatory system by the end. The half life of IVIG is estimated at about 20 days -- namely, after 20 days you have half the protection you had on day #1, and then it goes down quickly after that. Thus, the safest option is to get something like a 3/4 dose every 3 weeks, but check it out with your doctor, of course. We have some patients who get 1/2 dose every 2 weeks, either because of adverse reactions to large doses of IVIG or else because they start getting some symptoms before the 4 weeks are up.

Thank You Arturo for your advice. I am trying to adjust my calendar to maintain the four week intervals. Hope all is well with you.

I was diagnosed in 2012 and have been receiving IV saline only. I have read the Greipp research as well as the London study. However, there are no providers in my rural New England state with experience prescribing IV IG or any other treatments. My symptoms and attacks are becoming more and more frequent and I am feeling quite at risk. I plan to contact Mayo Clinic Jacksonville. Any advice?

Welcome to our community! I suggest you don't waste any time and have your main doctor read through the articles summarized in the Disorder Resources section of this site and then contact Dr. Kirk Druey, _kdruey@niaid.nih.gov_, tel. 301-435-8875, as soon as possible to discuss how to initiate your IVIG therapy. Your next episode could be your last.

Thank you very, very much. I contacted Dr. Druey and I am being considered for the protocol. This has given me new hope for longer survival.

You will be very satisfied with Dr. Druey. Not only is he the leading physician for those of us with SCLS, he is truly a genuine and compassionate doctor.

Thank you, rnuara. I am just home from the hospital after dropping in the middle of a church service where I was supposed to direct the choir and sing a solo. I am looking forward to new day.

Best Wishes...since I started my IVIG treatment I have finished my MBA (I quit because of my health) and have gone back to working full-time. I kind of have a four week cycle, I don't feel as well right before or right after treatment. I do have to really good weeks in between and cope with the other two. My Doctor has given me pain killers which I take sparingly. I hope all goes well fro you!

A lot of us are on 2 week schedules as opposed to a monthly one. The change has made a huge difference for me personally.

Still waiting for a couple of medical reports to see whether I qualify for the NIH study. Having a very rough morning. Light-headed, small veins, moderate edema, alternating goose bumps and sweating, slightly drippy nose. My only options here are IV saline and steroids. Hoping not to need to go to the ED, but getting very close.

My personal point of calling an ambulance is when I have difficulty breathing but a lot of medical staff are aware of my condition. Otherwise I'd go in a lot earlier.

Thanks. My pressure is going down so I'm on my way. I've also sent a note to Dr. Druey for a possible referral for IVig and/or albumin.

Good luck, we all wish you well.

I am going to be trying new cycle of very other week with half the doze of IVIG that I receive very four weeks. I have started to get to moody with the four week schedule.

I am going to be trying new cycle of very other week with half the doze of IVIG that I receive very four weeks. I have started to get to moody with the four week schedule.

My grandson Levi has gone from every 4 wks to every 6 he has had 2 infusions now with that schedule with no change in the reaction, a little vomiting the next day is his only post infusion symptom. Just an FYI for anyone in the community

My son was getting extremely ill from his IVIG infusion which was every 3 weeks. He is now on the equivalent of 0.5mg/kg of Subcutaneous Immunoglobin (per 3 weeks) which my husband injects at home every 2nd day. This keeps his levels stable and does not make him as sick as the higher dosage, which would peak and then come down. It is much more convenient being able to administer this at home, and only takes approx 1 hour.

I collapsed in a hardware store yesterday and was taken by ambulance to a small critical access hospital which in turn transferred me 80 miles to the hospital where my hematologist is located. I had over-exerted during the 14-day interval between infusions and was very ill two days early. Thankfully, I did not have a dangerous amount of swelling. However, the stress of the collapse exacerbated my secondary adrenal insufficiency. I was infused overnight with IViGG and one-on-one nursing care and felt much better this morning. I am experiencing deep fatigue but I am no longer sick. Now to rest and hope that my baseline returns to normal and that I make it to my next scheduled infusion. Any thoughts?

Sorry to hear about this, and I'm glad you didn't hurt yourself by passing out. You should find out whether your blood test results revealed hemoconcentration and hypoalbuminemia. If so, in conjunction with hypotension, you probably had an episode of SCLS; if not, you probably didn't. If your clinical and blood results are consistent with an episode of SCLS, ask for the hospitals to send your episode blood samples to Dr. Druey at NIH for his conclusive analysis -- today, before they throw it out. For further shipping and delivery instructions, have them call his office, because the blood must be chilled but not frozen.

Sadly, the blood is gone, but I will request the lab results as well as cortisol levels, if available. Weaning off the steroids always muddies the water of my episodes. However, the IViGG [with 25 mg hydrocortisone pre-med] stabilized me very effectively.