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For Saetienne (and questions for Wendy)

judithdavis3 Message
30 Jul 2008, 02:50 AM

I just found your info. Welcome to the SCLS community. This is very exciting to meet new patients. How often are your attacks? Do you see Dr Greipp at Mayo? You are lucky to be in Minnesota near Mayo. Do holidays and or stress effect the frequency or severity of your attacks? How are you doing coping with a chronic illness and being a new mom? Are you on any meds for SCLS? Do you do IV fluids at home or just orally hydrate?
saetienne Message
30 Jul 2008, 02:56 PM

I was very excited to find this website as I've not meet anyone else who has been diagnosed with SCLS and it's great to be able to share experiences. I actually am being followed by a pulmonologist (Dr. Mickman) at North Memorial in Minneapolis. I'm fortunate enough to live just 3 miles from a level one trauma center so when I do have severe attacks it can be handled very quickly. I was not aware of Dr. Greipp at Mayo until just yesterday but I am certainly going to consider contacting them now. I've not been able to pinpoint any triggers for my attacks except for stress. The problem is that I'm a single mom of three daughters and an attorney so my daily stress level is fairly high. This past fall when I returned to work after my baby was born I was having attacks every week or two - I could tell that it was when I was under more stress and very sleep deprived. I did read an article that suggested that allergens could also trigger attacks, does anyone have more information about that?? We moved into a home that is in a development just yards from a cement factory and the levels of lime dust don't allow us to open the windows even. Many of the homeowners in our development have developed respiratory illnesses and I've been wondering lately if this could have triggered some of my attacks. I actually am three hours from my immediate family so when I have severe attacks I have to head to the hospital with my daughters in tow until someone can come and pick them up. I'm lucky enough to have wonderful neighbors that are always willing to help out when they can's so important to have a strong support system! At 23 I was diagnosed with Chron's disease and had several surgeries to remove my large intestine and portions of my small intestine, so living with a chronic illness has become a way of life for me. I've been medication free with the Chron's for 12 years now. I don't currently take any medications for SCLS, my doctor just plans to treat the severe attacks. Is it common to be on medication for this?? There is so much I don't know yet about SCLS. Three weeks ago I was diagnosed with Rheumatoid arthritis and was put on prednisone for that, but I'm weaning off now and am down to 5mg daily. The only thing I'm taking now is a low anti-rheumatic drug. I'm very fortunate to not be on many medications. When I have more minor attacks I just hydrate orally at home, moderate attacks I go to the ER for IV fluids and severe attacks I get admitted to ICU with a central line for fluids and antibiotics.
judithdavis3 Message
31 Jul 2008, 02:18 AM

I went to Mayo to have my diagnosis confirmed. They checked for low albumin during the attack I had had, and they also checked for the paraprotein, MGUS. Dr Greipp has been dealing with SCLS for a long time. He did a study using theophylline and terbutaline in 1995. He now is trying singulair (it has anti leuketrine properties). The newest meds being considered are thalidamide, avastin and high dose IGIV because of anti veg f properties. SCLS used to be treated with steroids but it was discovered that the side effects were worse than the disease with minimal benefit. I was just diagnosed with lichen planus which is autoimmune like crohns and the funny thing is the treatment is prednisone. I infuse remicade at work on all of the teens with Crohns. I was having attacks every 5 days for over 2 years-mild to moderate severity-hydrating orally at home and just feeling like crap most of the time. I then had a 9 week break this Spring and now on steroids am feeling good. About allergens-talking to the few SCLS people I am in contact with the one common denominator we maybe have is exposure to mold. Mayo say there are no environmental, pharmaceutical, occupational common denominators. Stay healthy! Remember to not over hydrate on water-it will drop your sodium-mix it up with some gator. Also I discovered that all of those diet sodas I was attempting to hydrate with actually cause dehydration even decaf soda.
saetienne Message
31 Jul 2008, 04:22 PM

I spent some time yesterday reading Dr. Greipp's articles and then several others that I found on SCLS by various authors. It's very interesting to learn more about it but a bit frightening to read about so many who have not survived it. Are you currently on prednisone for the autoimmune disorder?? What dose? I'm glad to hear you're feeling better now. I have to agree about the side effects of prednisone, they're quite unpleasant and I'm happy to be coming off of it completely by the end of next week. That's very interesting what you mentioned about the mold, it's something I'd like to explore more. It just seems like there has to be something to it, but perhaps because there are so few patients with SCLS it's too difficult to find common denominators. Great point about the water, I'm always drinking gatorade too because it's hard to stay hydrated with my lack of intestines...everything moves through my system so quickly. I've also found I like the crystal light "hydration" packets to mix in my water bottles at work.
Maria Message
29 Jul 2009, 05:55 PM

This message is for member “Saetienne” Hello Saetienne, My name is Maria. I am 39 years old and have a chronic version of CLS. I recently visited the Mayo Clinic and they evaluated me. Currently, me and my husband are contemplating how we will plan our family. I noticed your information about your pregnancy and having a baby along with SCLS. We are trying to weigh all our options (pregnancy, surrogacy or adoption) and it is especially hard since no one knows what will happen during a pregnancy. It is a rare situation and I would really appreciate the opportunity to learn more about your experience and being pregnant with SCLS. I am very interested in getting in touch with you. If that is ok, please contact Arturo at and he can pass my email address address to you. Thank you!