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Treatment discussions

cmanmommy Message
4 Nov 2010, 08:02 PM

Connor is currently in the hospital with a minor leak episode. My husband and I want to start him on treatment. We are debating T & T or IVIG. I have read the posts and was hoping for some updates and opinions. We have an allergist who would treat with T & T, but still trying to figure out who would treat for the IVIG. Any advice and tips would be fantastic.
Windows Message
5 Nov 2010, 06:07 AM

So sorry to hear this. I hope somebody more experienced than me answers soon
jisenhour Message
5 Nov 2010, 12:51 PM

I'm currently on IVIG and its worked wonders. I'm not sure what T&T means bit I was on Theophylline for 5 years and it didn't make a dent. P.S. I can't imagine being a kid and having this. The good news is that, primarily because of Arturo and others on this forum, there is a lot more awareness of the syndrome and maybe some day they'll be able to figure this thing out.
clswalt Message
5 Nov 2010, 08:18 PM

I am now on IVIG since April 2010. Before that, I tried Singulair, Terbutaline and aminophylline (about the same as Theophylline). I quit the Singulair and Terbutaline because of sleep and moody issues. I don't have a good answer if one or two works better than others. I do think it is trial and error. It seems that we are all started on different meds. I don't think anyone has a good base on what should be started. I know IVIG works very well. I am doing very well on the treatment. Marc is a new CLS patient and he is not taking anything until he sees a specialist. So this one is hard to answer by anyone. To Arturo and Dr. Greipp How were the types of meds started back then for CLS? I assumed it was from Naeem K. Tahirkheli, MD, and Philip R. Greipp, MDfrom his 1999 report.
elganzory Message
5 Nov 2010, 11:48 PM

hi i send for you my best wishes i am also using ivig sinecs may 2010 it work very good becouse i us it in acut case at 11/05/2010 , thnkes and i pray god to plese your son
Windows Message
6 Nov 2010, 08:09 AM

It is good to hear something has worked! It keeps one's hope's up. Yes it is terrible for a child to have it. I do hope you find a resolution
dfye Message
8 Nov 2010, 12:52 AM

Connor is in my prayers. I was recently diagnosed with SCLS & Am on theophyline (?) We r currently in the dose boosting - blood work stage. Will keep you posted. Is Connor a football fan ?
cmanmommy Message
8 Nov 2010, 01:56 AM

Yes, Connor is a football fan and roots for America's Team- The Dallas Cowboys. He and his dad watch every game they can. He knows they aren't that good this year. He is actaully getting into hockey and likes the Capitals because they wear red- his favorite color. How does the dose boosting work? This will be our first time looking into treatment- even though he has had at least three attacks.
Windows Message
4 Apr 2011, 04:12 AM

I have just started on Theophylline and Terbutamol and am experiencing awful side effects, nausea, swollen neck glands and dizziness.I could not perform at all on a daily basis feeling like this.To those who have been there, just a question as to whether the body adjusts to this or do the side effects remain the same?
aporzeca Message
5 Apr 2011, 12:16 AM

Theophylline and Terbutaline are supposed to be given at low doses in the beginning, to see how a patient's body reacts to them, so start by asking your doctor how much you are getting now relative to how much he intends you to get in the end -- to get an idea of where you are going and how fast. Both medications are known to have unpleasant side effects, some of which diminish over time, and some do not -- especialy since the dosage is usually increased over time, so that even if the body gets used to them, the higher dosage makes it impossible to nullify their impact. Look for an increased heart rate, nervousness, irritability and insomnia as the dosage of Theophylline rises, and Terbutaline is also prone to induce shaking (in one-third of patients). I advise you to insist that your MD prescribe you a tranquilizer to offset the caffeine-like effects of Theophylline, or at least something to help you fall asleep at night. In case they haven't told you this, it’s best to take these medications in the morning and afternoon — preferably never in the evening, just like you would never want to take 20 cups of coffee after 8PM. Most importantly, these medications don’t always work in preventing the severity or frequency of future episodes, so early detection and better management of any additional episodes that may come along will need to become a priority going forward. In this connection, and since every episode of SCLS is characterized by hemoconcentration (namely, a decrease in plasma relative to red blood cells because the plasma is leaking out), you may want to check the Discussion Forum titled “How to Know When You Are Having an Episode of SCLS,” which I wrote when I was still having episodes -- despite taking the maximum recommended doses of Theophylline, Terbutaline and Singulair.
Windows Message
5 Apr 2011, 12:35 AM

Thank you very much for this reply. I am taking 500mg of Theophylline am and 250 mg pm. As we don't have Terbutamol tabs in New Zealand, I am also taking 10 mls of liquid Salbutamol- 5mg in morning and 5 ml at night. I have a fine hand tremor and racing pulse and insomnia and feel 'out of it' in the most unpleasant way. I certainly could not drive a car in this state. My doctor is a very caring small town GP who is doing all he can to help. So far I have seen no reduction at all in my swelling, which is up and down all day. I will read your post -thanks again
dfye Message
7 Apr 2011, 01:29 AM

My Dr started me on the Theophyline first & added Terbutaline later. My side effects are better. I usually have probs sleeping 1-2 nights every 2 weeks. I have learned to deal with them, but it has been about 7 months. It's better than a leak ! Hang in there !
Windows Message
7 Apr 2011, 02:27 AM

Thanks dfye. I will keep persisting..... It IS better than a leak although I guess it takes a while to build up? I am still leaking on a daily basis but am thinking not so badly but hard to tell as the weather has become cooler suddenly too. Thanks for the support:)
ValeriaSpain Message
23 Jul 2017, 06:15 PM

Hi All,

I am currently taking Terbutaline for a chronic SCLS.

Tomorrow,  I'm seeing my doc to introduce Theophylline to it as I just had a mild attack this past week.

Hence after 5,5 months, Terbutaline only  doesn't seem to be enough.

The doc is telling me that, in the case I suffer  a major attack or my albumin levels are too low,  he will institute IVIG.

So far, I am gathering all possible information as to T&T effectiveness.

Thank you very much for the information!


aporzeca Message
25 Jul 2017, 03:47 AM


Make sure that you read the Discussion Forum topic "Important new scientific article coming out."


ValeriaSpain Message
25 Jul 2017, 06:29 AM

Hi Arturo,

I did read the article and so did my doctor.

He is knowledgeable of the treatment of the acute form only. He needs guidance in regards to the chronic presentation hence he suggested to contact and visit Prof. Amoura in Paris in order to work cohesively.

My Spanish doctor would insititute IVIG in the case of another acute attack only.

I had the first one back in October, 2016 which turned chronic afterwards hence I've been experiencing recurrent mild episodes since. 

Terbutaline is not working properly after 5,5 months, theophylline was added yesterday and I am starting it today.

I spoke with Prof. Amoura and he acceded to see me and will be contacting me to set a date since everybody goes on summer holidays this week til September.

So far, I have to stick to T&T until he sees me, which is why I have been asking about the results.