It would be helpful to have information specifically from the chronic leakers. Have any chronic leakers progressed to the point of an acute attack, or do chronic leakers always remain chronic leakers? I guess what I am asking, is SCLS a progressive disease? If you are a chronic leaker who has never had a severe attack, what specifically pinpointed the cause of your swelling to be SCLS? And finally, what treatments are working best for chronic leakers?

I am a chronic leaker who has never had a serious attack where I was admitted to the hospital. I would always go into Urgent Care for 4 to 6 liters of IV fluids. I stopped this over a year ago. I now stay home and go to bed sleep and drink fluids. After 24 hours I start feeling somewhat better. My blood pressure at home has been as low as 60's with a orthostatic drop into the 50's. Being a critical care nurse helps me decide whether to go in for fluids or stay home -- which I now prefer to do. I have tried all of the preferred treatments -- Theophylline, Terbutaline, Singulair, Zocor, Revlimid, and IVIG with no change in how I feel. I just got back from NIH so I am hopeful that Dr. Druey might have some other recommendations. Heptagona (Steve).

Steve, I appreciate your taking the time to post here. It sounds like you have tried almost everything out there. If nothing that you've taken changes how you feel, does that mean you are not taking anything now? Are you swollen or leaking every day and then have periods where it is worse? Or, are you pretty normal until you have the rough periods? Have your symptoms changed at all over time? Again, thank you for your response, and I would be very interested to know if Dr. Druey makes other recommendations.

BBAMBER If you are a chronic leaker, follow Arturo's strong suggestion and receive the IVIG treatment. I was a chronic leaker for 2 years and it got worse each month until I started on IVIG. There is nothing out there for us, besides the IVIG. Start pushing for IVIG quickly, please. Walt

I am a chronic leaker who has tried all the various drugs listed above with limited success. I have not had an acute attack that I am aware of although having said that, I have been admitted to hospital a couple of times with severe stomach pains with no known cause....who knows? I have several episodes a day, and lying down in a cold room helps temporarily. I think heat, stress and exercise (which induces heat) are my main triggers. I have had it for 1O years or more and it is worsening all the time. I started IVIG 2 months ago and it is difficult to say at this stage if it is helping although it may be lessening the intensity of the swelling. I shall remain on the IVIG for 6 months and if it has not helped by then, I will have to discontinue. I have my fingers crossed that it will be the answer as there is nothing else left to try:(

None of you have tried food grade diatomaceous earth. It is cheap and sweeps the arteries, veins, and capillaries. Food grade DE also clears up parasites and viruses. People who swell should also have Hepatitis C ruled out. Check the serum albumin levels. Ebola virus can cause capillary leak. Niacin supplements dialate veins and capillaries. Histamine also causes capillary leak. "Elephants with an unknown virus had capillary leak":http://www.hopkinsmedicine.org/press/1999/FEBRUARY/990218.HTM The elephants died. Congestive heart failure causes swelling. Liver damage also causes swelling (can be cleared up from milk thistle and potato juice) Try lymphatic drainage massage. You need at least one gram of Vitamin C and Omega fish oils each day (to control inflammation). Some are helped by Vitamin K, but not sure of that dose. Near drowning damages the alveoli and will cause capillary leak. If a serotonin receptor is defective, it will allow too much Substance P which causes the capillaries to leak fluid and causes heightened sensitivity to pain. A serotonin deficiency will also cause nausea and vomiting. Imitrex is used for migraine but does so by acting on serotonine receptors. Only a doctor can test for sarotonin levels. The normal range is 101-283 nanograms per milliliter (ng/mL). Chronic Fatigue Syndrome, migraines, and anxiety are a red flag signal of possible low serotonin levels. I have daily swelling which I can keep to a minimum. My children have gotten very good at moving the swelling with massage. The swelling is worse if I eat anything with grains or sugar. There are times when I am almost swelling free. Through this site, I found that swimming is the best exercise. Unfortunately, I don't have access to a pool. Walking causes me to swell. I went for a walk with my daughter and we watched my hand swell. We discovered that opening and closing my hand for several minutes also helps reduce swelling. I eat berries to control blood pressure. My swelling is worse when I don't get my berries. I haven't taken Food Grade DE for some time. I need to take a couple of doses. It does help...a lot.

Wow! Lots of really helpful information. THANKS to everyone. If any of you change treatments or try something new that works, I would love it if you would post it here! Thanks again.

A thought- totally random- popped into my head when I read that 'near drowning damages the alveoli in the lungs causing capillary leak.' I am pretty certain that my SCLS began after getting pneumonia 10 plus years ago. I wonder if there is a link here? It is just a random thought but worth putting pen to paper about. Sarah

Very thought provoking.... Sometimes people have walking pneumonia. Simply don't know they are sick. Bacteria caused...not viral. I used to get migraines which can be low serotonin. I guess we need to run a survey to find out: Before you started leaking.... how many had pneumonia... how many had near drownings... how many had migraines.... how many have autoimmune problems... how many tried anti-virals...(did it help?) IVIG is anti-viral so I guess that would be a yes. This would explain why raw milk works so great for autoimmune. Collastrum has most if not all of the IVIG elements. Have any chronic leakers tried collastrum or raw milk? Of course, raw milk has to come from healthy cows without the mutated gene so prevalent in today's dairy herds. "See this link":http://www.extraordinaryhealth.com/ArticleLandingPage/tabid/2187/Default.aspx?ContentPubID=822 I have noticed that I swell more just before coming down with a flu or other viral. Sarah (Windows)...you made a great post. Very thought provoking.

To answer your survey... to my knowledge, I have had none of the above issues prior to leaking. However, I have always had weak lungs for as long as I can remember.. I started leaking when I was just 13 or 14 years old, so it is very possible I could have had pneumonia as a child and not known it.

Rivcal, I respectfully request that you create a separate site for swelling disorders *other than* Systemic Capillary Leak Syndrome, and that you devote yourself to that one.

I was told at the Mayo Clinic in Florida that chronic leak is not SCLS. I also do not exactly fit the profile of angioedema. It seems to me, given the latest research from the NIH, that capillary leak has many forms, some of which crosses over with more than one disorder. I love how my GP describes this stating that "not every disease reads the book", meaning that in the world of diagnosis many conditions don't follow the text book definition. This makes it frustrating for physicians as well as patients such as myself. I remain undiagnosed. For this reason, I read all things related to various forms of capillary leak.

Just out of interest, do you have other disorders like bleeding problems, very thin skin etc? I think I am falling into the cross over area too. I am a bleeder (Von Willenbrands), Ehlers Danlos Type 4 (mild) and the specialists are thinking they may also be tied in together. I agree it is very frustrating.

I have had problems bleeding related to all surgeries. I have required 4 blood transfusions. I also have recurrent yellowish bruising. Oddly enough, the bruising seems to be only in locations of previous surgeries. I have had tests for clotting factor conditions but nothing was ever found. I have never been told I have thin skin.

I am trying to find a pattern here. Bleeding MIGHT be part of it, maybe fragile capillaries? I have had blood transfusions too. If only it was that easy.

Dear All,

 

May you please update with the outcome of your treatments if any ?

 

Thank you!!

I would love to find a pattern! In the early years of my diagnosis my Immunologist asked that I keep a journal of the foods I ate, any stress stressful events that occurred, the order of the symptoms I suffered  and etc... prior to an episode.  I kept a detailed list over a one year period of time.  The only consistent pattern that we were able to observe was that prior to an episode I suffered from rhinitis, body aches, I did not urinate and I suffered a few sleepless nights. Common but not always associated with an episode I suffered overheating, exercise or an extremely stressful event.  

2015 was a bad year for me.  I visited the ER 4 times during the first six months and then once a month for the last six months.  I have a tendency to avoid the hospital until I am unable to breathe.  Every episode began with rhinitis, flu like symptoms, swelling, passing out while standing or sitting it was a total blackout and bam I hit the floor (I broke several of my ribs on many occasions and my front tooth twice), sleeping around the clock and then an inability to get air into my lungs.  I did not visit the hospital until I could not breathe. The pulmonary edema occurred quickly during the second phase and turned into pneumonia.

2016 I visited the hospital monthly until May. Same symptoms as I listed above brought me to the ER.  My Immunologist decided to increase the amount of IVIG I receive to meet the standard recommended amount.                               I haven't been back to the hospital since the increase in IVIG.  

2017  at the end of 2016 I began to swell in my feet hands and face.  The fluid moves around and often ends up in my abdomen.  All blood tests reveal that I am in Capillary Leak.  The fluid remains but it does not resolve?  My body is stuck in the leaking phase, the amount of fluid build up is growing but I am not entering the second phase.  

I too suffered a bleed in January 2015.  Hemoglobin of 4, Iron <1, low Albumin and a diagnosis of C Diff.  The doctors never found the cause.  6 of my 9 surgeries required blood transfusions.                                                                          I suffered double viral pneumonia once years prior to my diagnosis.  Autoimmune diseases I have been diagnosed with are endometriosis and thyroid disease, 

Are there any chronic leak patients who receive more than the recommended amount of IVIG? If you do has it helped?

Thanks Kimberly 

 

I did that too- kept a record and could not really see a pattern of any strong significance except heat and exercise and stress causes swelling.  I now have other auto immune conditions-auto immune liver disease so it may be good to have a liver function test done, just in case.

Immune suppressants do seem to help for my liver and also my SCLC, although it is difficult to know where the cross over point is. I am a chronic leaker too but have had a few acute ER admissions due to severe pain in my stomach. cause unknown

High dose IVIG stopped my acute episodes dead in their track and gave me a life.   HOWEVER, I was still left with autonomic dysfunction..i.e. Heat and cold intolerance,  inappropriate tachcardia under minor stress,  very labile BP, failure of my heart rate to respond to increased demand, and, of course peripheral vasodilatation with flushing and swelling etc.  These have been hugely helped by bisoprolol in small doses.

What does of bisoprolol do you take? I have found if I take it before I have exercise or a sressful event, it controls my swelling to a point