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Severe attack-anyone taking Zileuton Extended Release?

Hi everyone,

I haven't been on in quite a long time. I've had a lot happen since I was last here. I lost two jobs, both related to my health. The first was a hospital job, and I was walking around about 5 hours a day, and on oral prednisone for about 14 months because of a severe asthma attack, and I also have psoriatic arthritis, which means I have to do these very long tapers.

Then I worked for about 6 months at another company, but unfortunately broke my foot and was laid up for about 8 weeks. My doctor would have put me out longer, but I lost my job anyways. So I'm social worker, if you remember, so I'm now going into private practice. It was a big leap as I will now have to pay for my own health insurance, which will be very expensive (I'm in the States), but it will give me some more leeway to make my own schedule and keep up with my medical apts. I would sign up for Obama Care, but unfortunately in my state almost unanimously my doctors aren't taking it. This may change, as the system adjusts, but at the first of the year there was no way for the doctors to get paid in my state because no payment system had been set up. For now I'm O.K. though as I can keep the ins. from my old job up to 18 months. So it's expensive but I still have good coverage.

But I've been having a severe asthma attack for about 6 weeks. It got better for a week in there or so, but then I had to page my lung specialist on Easter my wheezing was so bad. I went from 20 mg. pred (which actually isn't that much for me) to 10, but then I was put back on 15. because my arthritis pain was so bad. Also, my breathing has been AWFUL. So so bad. I feel like my lung specialist has been avoiding me. I've been calling him daily.

So this leads up to Tues. night when he calls me at 7 p.m. and says he should admit me, but he is leaving town, but at least someone should order a chest x-ray, but really he has to go and take care of another critically ill patient. I did ask him a few questions- and got out of him I could wait a few days if I wanted to. Which I don't even know if that was good advice. But basically I was like ""I feel like the times I had pneumonia, I think I have pneumonia."" So then I tried to call his partner, because I didn't know who was supposed to order the said chest x-ray. Yeah. So Wed. morning I called the partner first thing. He is the one I talked to on Easter. Mind you I spent about 4 hours yesterday coughing so hard I could barely talk. Oh yes, and I've almost fainted multiple times as the coughing is triggering low blood pressure.

So my doctor's partner calls me back and asks me a bunch of questions. He did talk to my actual doctor (gold star). He didn't realize I also have a pacemaker (yeah you would think my doctor would have mentioned that one). He asked me all these questions about the asthma meds I've taken.

Right now I'm on Dulera 2 puffs twice a day, flovent 220, 2 puffs twice a day, levabuterol and ipatropium nebs 6x a day, motelukast sodium, and an antihistamine. Turns out they came up with a new drug i've never heard of.

I started taking zileuton extended release (Zyflo CR) this afternoon because it's a specialty drug and my pharmacy had to locate it. As far as I can tell it's like motelukast, but a super hefty extended dose that prevents the inflammation earlier in the chain. I had to call my doctor back and found out that he wants me to take the Zyflo with the singulair I'm already on.

The excellent part (knock on wood) is I already feel much better. A few hours after I took the first dose I could breathe in all the way, and my wheezing is almost gone to gone.

I know there are drugs available there that aren't here, but has anyone else ever taken this? I was surprised because I've worked in hospitals for years, but never heard of this one.

I'm also sort of stressed because my GP is recommending that I see my specialist's partner, even if it is as a one time thing to get a kind of second opinion. He agreed with me that my usual specialist sounds frusterated, and said that when you're treating a patient you can kind of get tunnel vision, and that having someone else look everything over from a fresh perspective can help.

I don't know, I'd hate to upset my original doctor. I had to go through quite a few others to find him!


1 Reply

Hi guys,

I just wanted to check in this morning. Even if you haven't taken the Zileuton, I was just looking for people who understand. My asthma has been so bad, I've been calling my lung specialist daily for like three weeks. I should have probably gone to the ER at least 3 times, but often I find the hospital is less timely than I am with breathing treatments. I'm probably just hating hospitals.

But I was just wondering if others can relate to this attack that goes on and on despite everything? It's really really discouraging. I can't believe how bad it is. And even more I don't know anyone else with asthma this bad.

I also have become rather a long term oral steroid user, which I never would have thought possible.



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