I am just a few days away from getting my second dose of IVIG , and already looking ahead for what may happen down the road. I have a few questions for those who have been under this treatment for a much longer time. For example, how long before you were able to quit taking or reduce the doses of theophylline you were taking? Have those of you who have been on this treatment for over a year tried to reduce dosages or stopped doing IVIG ? To what effect? Has anyone found a prevention for the muscle cramping that seems to accompany the treatments? I am under the treatment of a great doctor and would not try anything without his knowledge and approval but this site has been very helpful in dealing with this disease and every little bit of knowledge increases our chances to beat this disease. Thank you for your help.

Good questions, Gene! Here are answers from someone who has been on IVIG for 20 months, episode-free: 1) I kept taking theophylline for 5 months after starting on IVIG as part of a controlled experiment to see if its later removal would cause any problems. It didn't, so now we know not only that theophylline wasn't working for me before, but that all of the improvement since Day #1, and even since Month #6, is due to the IVIG. Your doctor might want you to try something similar -- hopefully involving a shorter time horizon. 2) Based on all the published and unpublished medical evidence of which I'm aware, (a) I would *never* skip a dose of IVIG and (b) I would *not* take less than the recommended 2gr/kg per month (over 2 days). 3) I have not experienced any muscle cramps, only occasional post-infusion headaches (1-3 days) which go away with Tylenol. Please keep us posted on how IVIG is working for you, OK? Good luck!

I've been off theophylline for over a year. I'd agree with Arturo that it didn't help much if at all. I'd STRONGLY agree with his second point. I had a major attack at the begining of this year that I believe was due to improper dosage with respect to my weight. Lastly I've never experienced ill effects. I've been told that my voice gets thick but I don't notice it.

Bonjour, je reçois des IVIG depuis trois ans, dès le début de mes traitements, j'ai cessé la Theophylline. aucune rechute depuis. 2gr/kg sur 2 jours et bennadryl 50 mg avant le début du traitement. bonne chance. Josée

I was weaned off of aminophylline after 4 months. It made no difference. It is inconclusive whether the Aminophylline ever helped at all. I have not experienced headaches, nausea or cramping on IVIG. Since the IVIG only lasts 28 days, I would not want to try missing a month. Life is almost back to normal on the IVIG. Yaser, Could you please update us on how your reduction of IVIG g/kg is going each month? Walt

arturo, we went to see Dr. M. Pecker on wednesday. i had been in bed for the two previous days and hoped to make it to new york for my visit and consultation. could you believe i had a episode after the initial visit, right in his office. he immediately admitted me into cornell hospital. i am having IVIG treatment tomorrow. i am so confident in dr. pecker and the staff. infact my hospital doctor told me she knew someone with CLS and it turned out to be you! her name was Alexandra Miller?? small world.! we are optimistic about the treatment and excited for a normal life again. custom(his wife)

I'm very glad that you are both now in excellent hands! The first patient in the world ever described as having what we now know as SCLS, and published about (by Dr. Clarkson, thus "Clarkson's Disease," the other name for SCLS), was a patient in the late 1950s who was seen at what used to be called The New York Hospital -- what is now New York-Presbyterian/Weill Cornell Medical Center, which is where you find yourself. (I hate to tell you, but she died. Fortunately, we've learned a thing or two since then!) They never saw another case until 2006, when I showed up at their door. And they have since taken care of a third patient who is a member of this RareShare community, as well. Don't forget to fill out your profile page with your medical history whenever you can. We're still learning from one another.

This board is a wonderful source of knowledge. I am so grateful I found it. Thank you Arturo and all those who have submitted such helpful information