My name is Mary Eileen, and I was first diagnosed with SCLS in 1998. I had severe swelling, and was in the hospital for two months. I was given prednisone to prevent an allergic reaction to the dye in a test, and the swelling improved drastically. I think I had the condition before, but that time it was a crisis for me. I seem to be affected by heat, and the most recent crisis was after having pneumonia. None of the doctors would give me prednisone, as they said it was contrary to what I need. My BP was very low. I found info from 1998, and when I showed that info to my family doctor gave me prednisone, and I lost 20+ pounds in about a week. I'm now trying to get information about what to do. I'm on prednisone 5 mg every day until they figure out what to do for me. My insurance company gave me this website, and said they have another patient who uses it. I don't know who it is, but am grateful to him for giving the ins. co. the information. Please be patient until I figure out exactly how to use the site. Thank you.

I have been on Prednisone since January and am taking 60 MG a day. It does have some bad side effects and I have to take Alprazolam along with it to stay calmed down & to be able to sleep. I also have very bad leg. & hand cramps. I initially lost weight in the beginning but have stopped. ..Donn

I began on the high doses, and gradually worked down to 5 mg. I had the same problem as you, with the jitters, and not able to sleep. It is good to know that I can be on increased doses of prednisone if necessary. Life seems to be full of compromises. I'm losing my hair, and don't know if it is from the illness, or medication. However, it's the least of my problems. If I have to get a wig, maybe I'll be a blonde or redhead. Mary Eileen

Dear Mary Eileen: Welcome to our community! I'm no medical doctor, but to summarize what we know: Prednisone and other steroids are recommended in order to abort or minimize an episode of SCLS, but they are NOT recommended as long-term, preventive therapy for all the well-known reasons why long-term use of steroids is not good for anybody. And while 5 mg/day is considered little, 60 mg/day -- are you reading this, Donn? -- is a lot. One of the first SCLS patients I was ever introduced to died from steroid-related complications after years of use (amounting to abuse), rather than from SCLS itself, so you don't want to go down that road. As you and your doctors will be able to see from reading through the material in Disorder Details and Disorder Resources, the known and relatively safe preventive therapies include Theophylline (often with Terbutaline and Singulair) and, when it fails, IVIG.

Thank you. It is amazing that after more than ten years, I am finally finding out information about this. I will be sharing with my doctor. I believe I'm the only patient he has seen with this, and he seems to be reception to my giving him information. Mary Eileen

Hi Mary I hope you get some answers here. It is a great site. Interesting to say that you think the pneumonia started it as I was thinking today that I also had pneumonia about the same time but never put the two together... I was sick for about 6 weeks with it but no swelling at that time. Maybe it is a piece of the puzzle, maybe not.I have also lost my hair but am not on prednisone so it may also be coincidental. I wear a lovely wig and never have a bad hair day so it is the least of my worries!! Nice to see you here

Hi I have been have trouble with reacting to IVIG. The doctor has started giving me Hydro-Cortisone IV before they start my treatments. It seems to prevent the fever, itching and rash I was getting from the IVIG. It also seems to have improved my overall strenght for about two or three weeks in between by treatments which are every four weeks. I feel like my old self for at least part of the month. I don't know if this is a normal reaction to the Hydro-Cortisone but it sure helps me.

I have learned more in the past few days than I've learned since 1998. I don't feel as isolated now and am very hopeful that I will be able to get successful treatment. They say knowledge is power. Thank you all for the information you are so kind to share. Yesterday, I was in a craft store for about a half hour. There were strong scents from the candles, etc. By the time I left, my eys were tearing, and my nose running. Then I was sneezing frequently for hours. It is very strange. I did sleep part of the night, but now the allergy symptoms are just as bad as yesterday. Maybe I'm getting paranoid,but every time something unusual happens, I wonder if it is connected to SCLS, or just a coincidence. I had cancer last year, and was treated with good results. This SCLS is more frightening to me.

Since an episode of SCLS is always characterized by hemoconcentration (namely, a decrease in plasma relative to red blood cells because the plasma is leaking out) let me reiterate something I wrote more than a year ago, when I was still having episodes of SCLS, in a Discussion Forum titled "How to Know When You Are Having an Episode of SCLS," now on page 6 of that section: "I would like to report that I have recently made good progress in identifying the presence or absence of an episode of SCLS in the following way. First, I now have (and use whenever I feel like it) a sophisticated medical device that measures my hemoconcentration within seconds: I prick one of my fingers and use the 2nd or 3rd drop of blood to fill a so-called microcuvette with some active chemicals in it, which when inserted into the device gives me a fast, objective hemoglobin (Hgb) reading — no matter where I am or whether it is a night, weekend or holiday. The device is made in Sweden, approved by the FDA for institutional or medical use, and is available to doctors, hospitals and blood banks around the world. (It is used mostly for the opposite purpose, namely, to spot persons with anemia.) It is not yet FDA-approved for home use in the USA, so one of my doctors bought it for himself and then resold it to me at cost. (I later submitted the bill to my health insurance company for reimbursement and, after denying payment at first, they ended up covering most of the cost once they got a letter from my doctor explaining how use of the device would help minimize the kind of frequent, expensive hospitalizations I had been needing – and they had been having to pay for.) The device is called HemoCue Hb 201+ (see it at www.hemocue.com) and it can be obtained by a medical professional in many countries around the world. The device has a one-time cost of about US$850 and a recurring cost consisting of a package of 200 microcuvettes (with 4 containers of 50 each, with a shelf life of about one year when unopened and 3 months once a container is opened) that costs about US$200 each, and which you have to buy one or twice a year, depending on frequency of use. [For more details on it, see the Disorder Details section.] The reading you get is usually a few decimals different than the one a hospital or professional lab gets using venal blood drawn at the same time, but it is accurate enough to give you and your doctors a sufficiently approximate level – and to catch increases in hemoconcentration as they happen (for example, by taking a sample every 3-4 hours when you suspect you may have started a capillary leak episode) at home or on the road. As a result, I no longer need to guess whether I am or am not having an episode, and if by chance I am having an episode, I can get the medical help I need, wherever I am, long before my blood pressure starts to collapse and I go into shock."

Wow, thanks for that information.Very helpful

of the three major attacks I've had, two followed a bad cold or flu virus.