Side effects of cozar (losartan)?

[Theresa]

Does anyone have experience with sinus congestion as a side effect of cozar? Justin (14 yr old son with WG) is wheezing like Darth Vadar. The onset started a few days after he went back on cozar. He is on 2 bp meds (cozar and lisinopril). Justin's pediatric rheumatologist, his GP and the nephrology fellow all wanted to take him off to see if the wheezing improved. However when they consulted with the resident nephrologist she said no. Thoughts? Advice?

[elephant]

If he is wheezing....I would take him off. They need to rule that out, or he can go into anaphylactic shock (severe allergic reaction). Go with the three( doctors) and take him off it. What BP medicine are they going to replace it with?

[Theresa]

Elephant,
Thanks for the reply. I did take him of the cozar for the last two days. But today we saw the ENT and he used a scope to determine that Justin has subglottic stenosis which is a narrowing of the airway below the vocal cords. He sees a pediatric ENT tomorrow to decide what to do. The WG dr is increasing his prednisone back to 60mg from 10, which Justin is very disappointed about.

Thanks,
Theresa

[Sangye]

Theresa, in case Jan doesn't see this before your appointment tomorrow, please make sure the ENT consults with Dr Lebovics in NY. He's an expert in SS in Wegs. You can get his contact info on the VF website.

[JanW]

Hey, I just got here - Dr. Lebovics number is 212 262 4444. Did your ENT say how narrow the subglottis has gotten? That alone could cause the wheezing. It's quite a serious situation, unfortunately. I had mine repaired in March and so far it has remained open, which isn't typical (most patients are going in for a second surgery two months later). After three or four surgeries the scar tissue usually stops growing back. I think Dr. L. has had someone go as long as two years without needing an additional surgery. Mine was down to a 2.5 or 3 mm when in an adult it should be 9 mm. I was misdiagnosed with asthma for five years before I developed a saddle nose and some other issues which lead to the diagnosis of WG.

[Theresa]

Thanks Jan and Sangye!! I will make sure we get a consult with Dr. Lebovics. Appointment is this afternoon. I'll let you know what they say. It is good to know what an adult subglottis should be. I'll find out how narrow Justin's is.

[JanW]

The other thing his WG doc should know is that SS doesn't track disease severity and that you don't use pred (or for that matter an immunosupressant) to try to limit the scarring. It doesn't work. They don't know what does work -- it's kind of a mystery. I mainly have the saddle nose and SS -- virtually no nasal symptoms, joint pain or anything else. I have foot pain which limits mobility, but overall I feel pretty well. I'm not on any pred and my SS hasn't changed. Luckily it can be well managed surgically. Unfortunately, there are only a few docs who do it the way that Lebovics does -- I don't know how close one is to where you live.