I have really given this terrible drug , plus it's equally nasty friend (in my case, salbutamol as terbutaline is not available here in New Zealand) a good go, I think. Having failed the first time and having started on too high a dose and literally poisoned myself, I tried again on a lower dose, building up to the higher dose. I do not know how long one has to be on the higher dose before it 'kicks in' but I do not feel it is having much effect on controlling my chronic leak episodes. I thought it had last time, even though I felt very unwell, but I am at a pretty high dose now and am still swelling up like a balloon several times a day. Now I am scared to stop as last time I had what seemed like a rebound effect and was worse on discontinuing the drugs. Can anyone please advise what is the half life of the drugs and also how long you have to be on them for their effect to be manifested? On another note, I see patients are being given IVIG here( one for 13 years) covered under the Government Health Scheme.. This particular person has hypogammaglobulinaemia (sp?) so it IS available. This is a good start for my research for the treatment. I hope you are all safe with the coming hurricane. God bless you all Sarah

Sarah, for what its worth, I am on 900mgs/day of Theophyline which I take 400mgs in the AM and 500mgs in the PM and it did, I think, ease the severity of the attacks which I was having every seven to ten days. It does not completely stay the attacks in my case. I get blood tests every 60 days to measure the Theophyline levels to make sure it stays in my system at a constant level. Terbutline dosage was only one pill a day although it was prescribed initially at three a day and I have stopped that since I started IVIG two months ago (with no subsequent attacks). In reading your profile I noticed you asked about respiratory ailments as being a prelude to attacks and, yes, in my case my two most severe attacks were accompanied by upper bronchial tract infections along with the "flu like symptoms" mentioned in the SCLS material on this web site. I get the pneumonia vaccine, flu shots and keep an emergency supply of an antibiotic just in case I get another bronchial infection. Please see my profile for a more complete history of my battle with this disease. Good Luck.

Thanks very much for your comments - much appreciated. I had a look at your profile and goodness , you have had a rocky road to walk! It is amazing how strong people can be under severe hardship. I have the flu shot and pneumonia shot too and have never had a pneumonia since that first terrible time after which the capillary leak started. OK, maybe my dose is still not high enough. I have got to 750mg of Theophylline and 8 ml of salbutamol . 10 ml of salbutamol was recommended but I get so much tachycardia, I am almost felled by it,with mental effects, confusion, headaches and the shakes. I am scared to go higher and as I live in a small town with no special hospital facilities, it gets a bit frightening. I still find tranexamic acid helps a bit too but only for a few days. I will try to get back to my GP this week and discuss the pros and cons. So you are still on the T and T meds plus IVIG? Sarah

Dear Sarah: It sounds to me like the time has come for you to persuade your doctor to start giving you IVIG on an experimental (off-label) basis. If you need a package of supportive articles and doctor testimonials, write to me at _aporzeca@american.edu_ and also get one from Warren's doctor (in Australia). And if your GP is not helpful, it's time for you to seek out the guidance of a senior internal medicine or hematology specialist, if possible affiliated with one of the medical schools (in Auckland, Christchurch, Dunedin or Wellington, I gather). They will probably have more clout with your government health service, I presume.

Thank you. I will do that.