Hi all I am wondering whether the members here, who either have the acute or chronic form of SCLS, have ever had, or presently have ,asthma? I am trying to see if there is a link between the two. I have had asthma all my life and it suddenly ceased about 9-10 years ago and the chronic SCLS began. Whilst this may be purely coincidental, I would be interested in your responses. My first symptoms also began when I was visiting Vale CO, and I was rushed to the emergency clinic. Could there be a correlation with high altitude and leak? Has anybody else experienced this as well. Thanks all and it is a pleasure to have found you :)

I've never had any troubles with asthma at all.

I have had asthma for the past 25 years. My asthma started before my SCLS. In fact my asthma has been deteriorating the past 2 years since my SCLS has returned. Heptagona

Thanks for replying so quickly! Do both of you have the chronic or acute type of SCLS? Heptagona, could you please explain what you mean by your SCLS 'has returned"? Did it go away for a while? Do you know of any factors in your life that made it go away, like a change in environment/lifestyle etc or what made it come back? Sorry to hear your asthma is so bad:( What meds do you take for the asthma and SCLS please?

I have had SCLS since 1997. It took 7 years to get it diagnosed. Once it was diagnosed it went into remission for 5 years. I have no idea what triggered the remission but I was thankful. I came down with a systemic viral infection 2 years ago. Since then I have been having attacks every two weeks and lately every week.I have made over 50 trips to Urgent Care for IV fluids, 4-6 liters a time. Fortunately I have not needed admission to the hospital. I have tried all of the meds known (terbutaline, theodur, Zocor, Singulair and Revlimid. I tried IVIG for 3 months with no change in frequency of attacks. I was hoping to try IVIG again but the insurance refuses to pay for it now eventhough they originally stated that they would cover it. As for my asthma, I was on systemic steroids for 12 years. Presently I am on Advair and Q Var inhalers. Since I am fortunate to live an hour from Mayo, I see Dr. Greipp frequently. I am also seeing Dr. Maddox (allergist) at Mayo for my asthma since it has deteriorated. I had a tension pneumothorax in 2002 which required admission and chest tubes X 2. From this I developed a moderate sized bullae. This maybe the cause for my asthma not reponding to medications. Lately I have also developed multiple small bilateral pulmonary embolisms for which I will need anticoagulation for the rest of my life. Through all of this I continue to work full time as a critical care nurse.

Heavens, you are one very strong person! You are an inspiration to me. I am not as bad as you and hope I never am but it is a life altering condition that's for sure. You are lucky to be so close to the Mayo Clinic. I do not know where the allergy side of things fits in to this whole picture as I am a highly allergic person too and have anaphylactic reactions to foods and other triggers and have been hospitalised for that.I find it interesting that IVIG only helps in some cases. It does not seem to follow any pattern that I can see except certain triggers like heat, exercise and stress seems to feature in many people... Thanks so much for replying. I am trying to see if I can put pieces of this puzzle together. It is so complex!

I have not had any Asthma issues. I was allergic to vegetables when very young, say 5-8. I have not been allergic to anything since I was 8. It is interesting that I have read on-line that Asthma and hayfever are related to being allergic to vegetables. Maybe the whole thing is tied to the immune system as some Doctors say. The IVIG works well on me which lends itself to an immune system problem. I did have hayfever for a few years back in the 90's.

Thanks for that information and glad to hear the IVIG helps- that is wonderful. There does seem to be an immune system involvement. I hope I am not allergic to vegetables- I LOVE them! Are you still allergic to them?

I eat anything these days. The only thing my wife keeps me from eating is a particular steak house. I ate their within two days prior to my first three incidents.

Yikes I don't blame her!

Walt, I have a place in DC I want to 3 days before my first attack. We call it the death restaurant and we've not been there since.

Do you people think it might have been something you ate or pure coincidence? I have had 2 episodes that put me in hopsital but it may have been a severe allergy to chickpeas (garbanzos). That is the only thing I can find in common with the two attacks. Needless to say, regardless, a bit like the restaurant above, lol) I have never eaten a chickpea since!

For more on aged beef as a possible trigger - Check the posts on aged beef 'Aged Beef Enzymes - a trigger? I think there has to be something to this. Chick peas - I doubt it - but who knows PRG

I did check out the trigger section. I also find paint fumes are a trigger for me. I am not prepared to check chickpeas again, not even in the interests of science!!

Had my first episode since 4/2009 a few weeks ago. Theophylline level was 7.7. In July theophylline levels dropped to 10 after holding steady between 15-16 for a year. My doctor consulted a Pharmacist who told him that char-broiled foods are known to increase the metabolism of theophylline - but I hadn't eaten any recently. Other than avoiding fructose, the only other notable change to my diet recently was reduced calorie peanut butter. I thought I needed to eat more protein in the morning, so I began putting a little peanut butter on a bagel or toast in the mornings. Started doing this early July (and later that month my theo levels dropped). Ate peanut butter crackers one day in hospital. Next day theophylline levels dropped to 11 (from 14). Could be coincidence. For now, I've stopped eating pb and theophylline levels are around 20 (dosage was increased too but cutting back).

Hi MDWESTON, I hope you are feeling much better !! What were your symptoms when your episode began ? I was recently diagnosed with SCLS & started the theopalline (?) Getting my blood checked this week for the second time, so I'm in the learning curve. Wasn't aware of any diet chgs to e aware of. Thanks for the post - You R in my prayers ..

Hi MDWESTON, I hope you are feeling much better !! What were your symptoms when your episode began ? I was recently diagnosed with SCLS & started the theopalline (?) Getting my blood checked this week for the second time, so I'm in the learning curve. Wasn't aware of any diet chgs to e aware of. Thanks for the post - You R in my prayers ..

Sarah In case your tracking, I have asthma also. I take albuterol.

Thanks Susan. Yes I am tracking so all replies are really helpful