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Rareshare Capabilities

clswalt Message
7 Mar 2009, 06:03 AM

From Walt: Hello all I work on my CLS records weekly to come up with a "why" does it happen. Alone I have only my records. With all of you, we have a possible data base. I had narrowed mine to two possibilities: 1. eating out at restaurants (something in the food) 2. Colds/flu/upper respiratory I am now not convinced of either. Arturo, Is there a way to have a central spreadsheet or something that we can all ask questions and everyone submit their answers? With only a few people with CLS, I believe that we can help doctors by doing something that they just can't do on their own, collaborate data weekly or monthly. I have been asked general questions by my doctors, but never have I had the chance to compare notes with other CLS patients. I have never been sick, never been in a hospital until 2005 CLS and never had to take medication on a daily basis until the 2008 CLS. I went three years without any incidents. Why was 2008 so bad? Most of us seem to be around the same age, some have noted Crones disease, which I have mild colitus. The doctors would have to spend considerable time trying "triggers" to see what would set us off. They fix us, but they just don't have the time to keep on us with questions either. We also use different doctors. Their data base can be only as good as the info we provide. I would help in any way possibe. I gave my word to my wife and 3 children in feb 2005 that I will be around for a long time. I will not go back on my word.
judithdavis3 Message
7 Mar 2009, 08:02 PM

Walt I am an RN for 30 years. I have been keeping extensive daily records for 3 years (I keep thinking "I don't know why I am doing this-no one will ever want this info). A lot that you said resonated with me. I leak every 5th day. It is the pits. I feel like crap most of the time (I work a full time job and a part time job-I have 2 sons in college) so I feel like crap at work all the time. I have 1 good day out of every 5. I was in ICU 8 times in spring of 2006 but since then I have been hospitalized about once a year and not for SCLS but complications from SCLS-stomach virus-dehydrated and then a leak occurs-double whammy-needed IV fluids-got fluid in my lungs from the IV's. I now have something like colitis but I believe that I am leaking into my intestines and they are very effected by big fluid shifts. Albumin makes me feel better but my docs say it will leak out also. I mainly get normal saline. Anyway I have lots of data-the symptoms, the cycle and I rate the intensity of every leak on a 1-10 scale. A few of us think mold/mildew might be a factor. I always think I am getting a cold when I start to leak because my nose runs but I am not. Most of us with SCLS have been very healthy before SCLS. Another commonality is type A personality-working more than 1 job-very busy in life. Let me know if you want my data. I think that we need to have a SCLS conference now that there are quite a few of us. Arturo has been working on trying to set up a conference for years. I am going to NIH in a few weeks. I will suggest a conference to Dr Druey. We could do a support group as well now that there are more of us connected.
jisenhour Message
8 Mar 2009, 12:54 AM

My trigger seems to be either physical or emotional stress. I've gone to great lengths to eliminate work or home related stress. Colds and flu's seem to be a factor too.
rnolan Message
8 Mar 2009, 01:05 AM

Not sure about my trigger however I did have a bout of tonsillitis before my major attack. I am interested to know about the MGUS protein?
aporzeca Message
8 Mar 2009, 04:55 AM

I have had 4 episodes in the past 3 years and they all started with runny-nose, flu-like symptoms -- which is the most frequently reported symptom. The first three coincided with major holidays (Thanksgiving, Easter and Christmas, respectively), so one might think that holiday-related stress plays a role. However, holidays also bring people (with colds and other illnesses) together, so my suspicion is that it is the human contact aspect of the holidays that is our problem -- and not just the stress of the holidays -- because for some reason our immune system has become compromised. Indeed, all 4 of my episodes were preceded by some close family member having had a cold a few days before I myself caught the cold and started an episode -- such that I now regard a cold/runny nose as the official start of a capillary leak episode. (And, indeed, a runny nose IS a form of capillary leak!). Since my 3rd episode was cut short by the up-front administration of large doses of steroids in the ICU, I was advised to take such steroids immediately upon the start of any future runny-nose episode, in the form of 80mg/day of Prednisone pills for a maximum of 5 days, under strict medical supervision and with daily tests for blood concentration. I did as suggested when I got my 4th cold and, sure enough, the subsequent capillary leak episode was cut short and I didn't need to be hospitalized. As concerns the MGUS protein that most patients with SCLS have, its significance is unknown. The protein is relatively common: it is present in about one in 100 people aged over 50, very few of whom end up with myeloma (cancer of the plasma cells) or lymphoma (cancer of the lymphatic system). I don't recall reading that anyone with SCLS ended up developing these cancers, so I don't worry about that outcome.
clswalt Message
21 Mar 2009, 06:01 AM

Judith I too have bouts every week. I am surprised that others do to. I am really just learning about CLS through this website all of your messages and updates. I have three symptoms when I leak. 1. Feel so tired that I don't care about anything but sleep. I have never slept in until CLS started. I also only sleep 3-4 hours a night due to the new meds for CLS. 2. I carry a blood pressure cuff with me always. My blood pressure will go low (75/50) then jump back up to 150/80. I have had 120/80 all my life as well as recently. Since I have been on terbutylin, aminophyline and singulair, I do not pass out on low pressure. Passing out so far has meant kidney failure and intensive care visit. 3. Goose bumps and a tunnel like feeling that I am just not clear at thinking. It is hard to describe how I know to go the ER for the Albumin , but I know. I have had all three symptoms and it has passed on its own. I have received albumin intravenous approx every 3 months since Jan 2008. It takes about 2 hours at the ER. 50 to 100 cc at 25%. I feel clear headed and perfectly normal half way through the albumin. It truly has worked well and serves as a radiator leak repair for the CLS. If the albumin is not delivered at full drip, it does not work well. I can not take saline because it seems to make the cls worse. I do not get the flu or colds except I had upper respiratory before my jan 2008 episode. I am unfamiliar with MGUS protein so I need to get informed. Can we post our e-mail addresses on our profiles. I do not know the rules yet. I would like to get your notes and provide mine as well.
judithdavis3 Message
22 Mar 2009, 04:56 AM

Walt There is a patient in Idaho who leaks every 4-5 days as well and there was a lady Marianne in Cincinatti who also leaked constantly-every 4-5 days. She had SCLS for 17 years-she died May of 2007 from a ruptured bowel from taking prednisone for many years to treat SCLS. She became a good friend by phone before she died. I have alot of symptoms when I start to leak-thirst, lower back pain, grouchy, feel antsy/anxious for no reason, runny nose, sweat, upset stomach, decreased urine output. I only go to the ER when I can't sit up because I pass out or am too dizzy. I drink alot of water when I start to leak to try to avoid the ER. Dr Greipp says too much water can cause electrolyte inbalance so I will add in gatorade after 3-4 bottles of water. Almost everyone with SCLS has an MGUS-monoclonal gammopathy of unknown significance either a kappa or lamda marker. It is actually one of the main indicators for confirming the SCLS diagnosis. It can be associated with cancer and I read in the literature that 3 SCLS patients did develop multiple myeloma or lymphoma (I think years ago). There is no strong association today that I know of though. We are allowed to give out info. My email is All of my data is in yearly planner books. I bought excel for my computer to try to organize the data but haven't figured out how to use it.
allenoverland Message
23 Mar 2009, 04:48 PM

Thanks this is alll great information!
kmiclon Message
27 Mar 2009, 02:58 PM

I am so grateful and excited to have found this site, having been recently diagnosed after 2 years of searching. I am 41 (wondering about ages of everyone else), and it sounds like I have a milder case of SCLS. I had the swelling, beginning 2 years ago with my ankles & legs, my primary care physician (& cardiologist) telling me I was getting older & needed exercise :-). I was working 5 days a week at an office job, and evenings & weekends at home (running) on my feet helping with a renovation & raising 3 teenage sons & maintaining a large home/business. I have always been very healthy, considered myself a 'rugged country girl' - until now. The lack of trust I feel about my physical capabilities & well-being has been quite unsettling, but I am getting very good at listening to my body. My crisis points seem to center around my hormones. I have been maintaining on a diuretic for the last 6 months, and see that I need to go off for a couple days around my cycle to keep my fluid levels in check. I have been to the ER 6-8 times in the last 2 years, had a pericardial window Feb 2008 after fluid gathered around my heart, have had episodes of passing out (from dehydration/low blood pressure) 3 times. I have also kept journals for short periods to see if I could find a pattern, and would love to compare notes with others. It is so hard to stop wondering if every food/activity/sleep pattern/ache & pain/etc is a cause or effect of this issue - that is one of the biggest frustrations for me. I am also interested to see how others maintain a 'normal' lifestyle, coping with exhaustion, muscle weakness, dizziness day-to-day (and the rollercoaster of what each new day will bring). Are there specific vitamins, foods, medications, exercises that others find helpful?
judithdavis3 Message
27 Mar 2009, 03:25 PM

Hi to kmiclon! Welcome to the rareshares blog. You can go to the community of SCLS and many members have listed their birth dates. The majority are between 40 and 60 years old. I can relate to everything you said. How often do you leak? Where do you live? Have you consulted with Dr Greipp at Mayo clinic? NIH in DC is doing a study and needs more patients. Dr Kirk Druey is the principal investigator. I have his contact info if you are interested.
kmiclon Message
30 Mar 2009, 06:07 PM

I just sent an e-mail to the contact for the study at NIH (thank you for that!), and my doctor is contacting Dr Greipp. I am in Maine, but am more than willing to jump in the car & head to either place at a moment's notice. As far as how often I leak, I am not exactly sure - I am constantly swelling (full body) unless on the diuretic. I have been in trouble when my fluids are at either extreme and I get very dehydrated, or before I was on the diuretic and fluid would build up around my heart and/or lungs. How long have you had this? Are you taking anything (or doing anything) that is helping? I am curious also about your trip to NIH, and anxious to hear back from them -
judithdavis3 Message
31 Mar 2009, 02:53 AM

To answer kmiclon-I got sick August of 2004 and got diagnosed SCLS Dec 9th 2004. The 2 phases of SCLS are leak phase lasting 1-4 days and the recruitment phase lasting 1-4 days. I leak for 24-36 hours every 5th day and then recruit for 1-2 days. So I always have edema lower legs and around my eyes. I am on singulair because it has leukotrine blocking capabilities. Cancer patients who are given Interleukon 2 infusions can develop capillary leak syndrome but theirs is not idiopathic like ours. They know what caused theirs. So singulair is supposed to help and I have done better since June of 2006 when I started the singulair (and came off theophylline and terbutaline). I only take lasix if I have fluid in my lungs and can't breathe. I also do not touch caffeine because of its diuretic properties. I am so glad that you responded to NIH. A few others have as well. They need to gather data on all of us and then compare all of us to look for similarities in order to figure this out. NIH was great! The place is huge. The principal investigator, Dr Druey, and his team are wonderful. Many different doctors consulted-rheumatology, hematology, infectious disease, pulmonary. Blood samples were taken as well. The food is actually good as well.
clswalt Message
1 Apr 2009, 01:43 AM

Judith You said that you went off of theophylline and terbutaline and went to singulair. Would you mind telling what the decision was based on. I am actually on all three now and seem to be doing much better. My heart rate is down to 95 from 125. Not low as my old 65 but getting closer and getting more sleep. My blood pressure has been great the last week. I started all three about 5 weeks ago.
judithdavis3 Message
1 Apr 2009, 04:57 PM

I was in ICU 8 times in 4 months in Spring of 2006. I came off T & T as per Dr Greipp June of 2006 and started Singulair (leukotrine blocker) and have not been in ICU since. I have been hospitalized 4 times since 6/06 but for complications of SCLS not direct SCLS. Dehydration from stomach virus then a leak, lower extremity cellulitus from chronic swelling form SCLS, and respiratory distress from a bad cold and then fluid from SCLS twice.
beau Message
2 Apr 2009, 08:45 PM

Hi, I have be diag with CLS since 2006. Started with it in 2005, but Dr's didnt know what I had. I too had a cold when everything started. I was really never sick prior. Went thru the whole thing as far as what everyone else has said. I feel like Im reading my own medical record. I have not (so far) had another attack since. What worries me the most is that you just dont know when it hits what Dr's can do for you to get you out of it other then pump you with fluids and put you on streiods. Im new at this web site, but I will try to give you all the info I can. I think its great if we can make more people aware and list what has happen to us when we were first hit with CLS.
allenoverland Message
7 Apr 2009, 07:48 PM

Hi all, I am just on theophylline now, 900 mg a day and was curious to find out if a drug like singular could be taken in place of theophylline.
judithdavis3 Message
7 Apr 2009, 10:32 PM

Allen I was on both singulair and theophylline and I know of others with SCLS who are on both. I am not on theophylline any more. It did not work for me. I seem to be ok on singulair. They are both very different drugs and act very differently on the body. Of course ALL of these drugs are just a shot in the dark-until the docs find out what causes SCLS they will not really know how to treat it (my opinion). Onc pts on interleukon 2 infusions get SCLS but then it's not idiopathic (the docs know what it is from) so singulair is a leukotrine blocker thus MAYBE it will help people with ISCLS. Dr Druey and Dr Greipp have discussed some possibilities and Dr Druey is initiating some clinical trials at NIH. Judy
biotechguy Message
2 Jun 2009, 04:25 PM

Hi Everyone, I wanted to take a moment to let you know that Arturo, Eric (another RareShare team member) and I had breakfast this morning to discuss the possibility of having the ability to upload documents into RareShare. We all think its a great idea and we've added it to our priority list. Although I cannot provide an ETA for it, I did want to let everyone know that its on our radar screen. Best regards, David