New-to-me OTC Mucous Thinning med

[BookNut]

I have been taking Sinatrol recently for my persistent mucous issues - both sinus and lungs. Although I am AGAIN in an asthma flare, I will say that it DOES help getting me out of the mess. Woke up this am wheezing very badly - but the pill actually helped more than the nebulizer.

http://smile.amazon.com/Ortho-Molecular-Sinatrol-60-Capsules/dp/B000UBEKQ4/ref=sr_1_1?ie=UTF8&qid=1431284244&sr=8-1&keywords=sinatrol

CAUTION! I AM NOT SURE IF IT IS OK FOR WEGENERS. But - if it is OK with your doctors, you might want to give it a try if you are having mucous/respiratory issues. Anyway - I am very impressed with its effects right now. MUCH better than Mucinex. I think the biggest problem will be figuring out when I should take it and how much.

Sinatrol by Ortho-Molecular is ridiculously expensive. There are MUCH cheaper versions on the market. The generic for this OTC supplement is N - ACETYL CYSTEINE. It is also commonly stocked by hospitals, as one of its major uses is to counteract Tylenol poisoning. I have ordered one made by NOW Foods, and will let you know if it is as good. The one thing about Sinatrol...it has a seal of approval from an organization that keeps track of herbals. They have to pay for the right to use the seal (GMP), hence the expense. My integrated medicine doctor recommended this company when I asked her for which supplement companies were the most dependable. The internet says NOW has the approval too - but I do not see the seal anywhere. When I looked up which companies had the approval NOW was listed - but the Sinatrol company was not...although the Sinatrol has the seal on the label. Very confusing - but given the bad press supplements have gotten lately...it pays to be careful and try to sort it out.

My wonderful asthma doctor will be conferencing with my PCP, pulmy and ENT this week. I am excited to think that we might come up with a new treatment regimen!!

[annekat]

Good report, Jacquie. I know N-AC as a mucus thinner has been discussed on here before, I've researched about it, and there might have been some warnings about it, which I don't remember, but I don't think those were WG specific, and maybe they were even for a different supplement.... As for the herbs in Sinatrol, I looked those over a couple weeks ago and DIDN'T see anything that I thought would boost the immune system, a no-no for Weggies. And some of them I recognized as anti-inflammatories. But I am definitely NO herbalist. As for the NOW brand, I've found that at Super Supplements and probably even some grocery stores, have used it, and found it to be fairly reasonably priced. This was mainly before I knew I had WG and was trying different things I'd heard of for allergies and such.

I'm sorry the asthma has returned and am wondering if it is in conjunction with your trying to stop the prednisone. I may be in a similar situation, as my breathing difficulties have cleared up since I've been taking more pred, which I don't want to just keep doing. I think the pollen counts have dropped, too, which in my case, probably helps. But I'm still confused about what was going on, since there was one night a couple of weeks ago when I not only couldn't breathe and was coughing all night, but had a fever of 101.4 to boot. It passed quickly, though there's still been a lot of fatigue which has now improved. So I don't know if it was a mini-flare, allergic asthma, a touch of bronchitis or flu, or all of the above! Right now I'm back to the usual WG syndrome of mostly breathing fine and only having problems if stuff collects in my windpipe, which then can be coughed up fairly easily. I'm using some liquid guaifenisen, which is now helping, though it wasn't so much before. But I'm anxious to try some of that N-AC stuff one of these days. It remains to be seen whether reducing the pred will have an adverse effect on my breathing. In the past, this hasn't been true to any great extent.

Well, I said a lot of it here instead of in an email, but will still get to that..... I hope things improve for you. It's distressing to hear of all you go through with your breathing and the solutions only appear to be temporary. I know your husband, Bob, has asthma issues, too, and hope he is doing OK.

[BookNut]

The cycle you describe sounds a lot like what I used to have...even before the asthma hit...mini-infections that happened occasionally, along with a fever. I always had a cough. Sometimes would be treated for bronchitis. The attacks started being longer..but always just in the Fall. Then whammo... asthma appeared, symptoms increased and became more frequent. The whole history is what led to the bronchiectasis ultimately. So...I would defintiely urge you to have a CT scan to check for it, as one of its causes is multiple infections. I have to suspect that Weggies with respiratory involvement must be very susceptible to this...and doctors are not the best at checking for it.


I think I definitely have prednisone dependent asthma. I am looking for SOMETHING that might help me get off it. I have a ton of questions for my next appt which is next week. We are looking at many different options, looking through the lens of bronchiectasis as well as persistent, difficult to treat asthma.

I would love to see you take all possible steps to avoid the vicious cycle of infection and asthma exacerbations. Even if you ARE pred dependent...if you can be on a low dose that would be better than where I am at right now. I think my doctors have been making a mistake prescribing so many high to low tapers. I plan to ask them if I would be better to try to drop down gradually and stay on a very low dose for awhile,before attempting to get off altogether. I was shcked to count up pred taoers and realize that, counting my two hospital stays, I have been prescribed prednisone 13 times since last May. Whoops...that is the pred confusing my mind. I went back and checked. Only 9 times. Still pretty bad. Worth keeping a medical timeline to check on things like that!! Especially when you have doctors in multiple systems.

Adding Wegs to the equation for you makes everything that much more complex. I hope you will not be bothered with anymore episodes!!

[annekat]

Thanks, Jacquie. Those are some interesting thoughts, which I will take seriously. It all seems so complicated to sort out the possible scenarios when WG is present on top of whatever else is going on, or when WG may be contributing to the problem to an undetermined extent. I have not had a chest xray in a long time, as my pulmy always thinks my breathing function level is acceptable. But I think you are right that a CT scan would be better. They show so much more. I see him in 3 weeks and will know by then if I've had any more episodes while tapering the pred.

I will keep mulling all this over before sending you my promised email. I need to get some other things done today, too, so it may be later in the day or this evening.