Hello all I'm writing to update you guys on my experience and what I've been through I have still been on steroids prednisone to be exact my last attack was December 27, 2015 I take 5 mg of prednisone daily and have no attacks whatsoever all blood work comes back normal I just seen my hematologist today he really wants to take me off of the prednisones and start IV IG therapy because of the weight I have gained I have gained approximately 40 pounds and he thinks that it is because of the prednisone I am scared to start the IV IG because I don't know what to expect but on the flipside I'm gaining lots of weight and we are not sure if it's because of the prednisones or not I believe that a 5 mg dose of prednisone is fairly small and I am so reluctant to start IV IG because I have had zero attacks and have been in remission for so long now on the prednisones prior to taking the Prednisones daily I was having about two attacks a week and ending up in the ICU quite often and near death many times if anybody has any advice or comments or anything at all to help me feel better about starting IV IG please feel free to let me know.

IVIG is the best available treatment for SCLS and is nowadays considered the gold standard of care. And that is so because it has been associated with a dramatic reduction in the occurrence of SCLS attacks in most patients, with no or minimal side effects. In my case, I had 5 serious episodes of SCLS in the 9 months before being put on IVIG, and I have had zero episodes of SCLS in the 7 years since then. On the other hand, steroids including a corticosteroid like Prednisone, while they can help to prevent or shorten episodes of SCLS, have well-known damaging side-effects. These include fluid retention, weight gain, increased blood sugar (which can lead to diabetes), change in body shape (increase in fatty tissue on the trunk while the arms and legs get thinner), increased susceptibility to infections, acne, thinning of the skin, easy bruising, increase in blood pressure, unfavorable changes in cholesterol levels, irritation of the stomach and small intestine lining, ulcers, bleeding, early cataracts and glaucoma, thinning of the bones leading to osteoporosis, and etc. One of the first SCLS patients I ever came to know had been treated with steroids for many years. She eventually died from steroid-related damage and complications -- and not from SCLS. And yes, I've also known confirmed SCLS patients who thought that since they had not had any, or any serious, episodes of SCLS in a while, they should not subject themselves to an IVIG therapy. They too eventually died from major episodes of SCLS which seemingly came from nowhere. Keep reading the information in this website and make your own informed choice. It's only your life that's at stake.

Hi garuam... Hey, 7 out of ten people who responded to the survey are on IVIG. They are sailing along well. (With some headaches etc which seems to come if the infusion rate is fast). But the others? Well their main problem is uncertainty. Uncertain if they'll get another attack. Uncertain about other side effects. Etc etc. As Arturo says, "you can spend your life with uncertainty, and side effects, or you can go for gold." It's up to you. C'mon. You are worth better than seconds. Btw, one effects of steroids/weight gain not mentioned is bad news for your ovaries. Even at low dose. Whatever you do, just keep positive. John

I'm receiving IVIG today. The first attempt went poorly and had to be stopped. As much as this is making me feel terrible, I'm desperate to feel normal and look like myself again. I'll gladly take the nausea, flu like symptoms and paresthesia once or twice a month to avoid the risk of an acute attack, and the chronic symptoms as well. Theophylline, Terbutaline and steroids only served to slow it down. Hopefully this will go well enough over the next 10-12 hours that I can see results.