Anyone Referred To National Jewish Health Due To Intolerance To Meds?

I am currently not on medication because after I took the big 3, the MAC returned (or was never really gone). When I was taking it, I was on a three day schedule. I would take azithromycin one day in the evening after a big meal. I found that if I didn't eat vegetables I could eliminate most of the gastro symptoms. The next day, I would take the rifampin on an empty stomach, then eat lunch two hours later and I would take the ethambutol at night after dinner. I was able to manage that schedule just fine for the most part except for a bit of gastro issues from time to time, but not bad. I did that until I couldn't anymore after 16 months because of neuropathy in my feet from the ethambutol mostly and hearing loss from the azithromycin. When the MAC was confirmed again, I was supposed to take azithromycin every day along with rifabutin and inhaled Arikayce. I started the first week with the azithromycin and tried to manage the gastro problems but it was much worse every day than the every other day regimen. Then I was told to add in the rifabutin the second week and that compounded everything. It was so bad for me that I was in bed and couldn't function. But I've had IBS on and off in my life even without these meds so I would say I'm probably super sensitive. I had to quit the meds per my ID doctor and now I'm watchful waiting and going to contact National Jewish Health at the suggestion of my pulmonologist. Thankfully, I have very few symptoms and wouldn't even know I had it otherwise. Good luck with the big 3. I know it works fine for many people.

Hi. I can tell you that a new infectious disease doctor told me to not take a cholesterol and anti reflux meds while taking the big three. He also recalculated the dosage and found that, based on my weight, the original Dr had me on too much so he reduced one of them. The pharmacist also told me to space the meds at least 4 hours apart. I’m following their advice and so far so good. 🙏🏻. The first month when I was taking all meds it didn’t go well. Now, with the change it’s good. I hope that helps.

My doc said NJH would want to re-do all tests, though I haven't yet asked him if he can do a phone consult. If my tolerance to the meds declines again, I will. I don't recall where I read that a stay means a week. So, I guess that's hearsay. 😉

Which one did you reduce? I'm on a little more ethambutol than the recommended dose, but my doc said positive treatment outcome is more likely with higher dose (1600 mg vs 1200mg). I've read and seen (on videos, for example, recommended on this site) so many different recommendations about the timing of taking the meds. I think it's an individual thing and it's okay to experiment.

Hi Shelly, currently, I take the ethambutol (E) on empty stomach when I get up, then the azithromycin (A) when I first eat, which could be an hour or so later. Then, I take the rifampin (R) with a tiny bit of bread and little water before lunch--or mid-afternoon if I'm away from home and can't do the lunch schedule. This, so far, is helping. I got the idea of this schedule from one of the videos (a talk by a doc) someone on this site recommended. I'm sorry I don't know the url. My doc said as long as I take all 3 within 24 hours (I'm on 3x/week schedule), it's okay; so, I've felt free to experiment. Taking the R early in the morning on empty stomach, then the A with breakfast did not work for me.
I hope this helps, and good luck!

Ethambutol down from 1600 mg to 1200.

@winema,@linda1334
NJH is not an in hospital situation for most and not for BE patients going for an evaluation with BE, Bronchiectasis, and an infection, if that is what someone implied. My feeling is that the facility is more like a clinic than a hospital......it is mostly for evaluations and only for possible hospitalization for certain illnesses and the degree of the illness.
The evaluation with BE and an infection involves many tests and if one knows what tests they have had associated with BE and their infection before going and the tests were done within a short period before a visit to NJH the tests may not have to be done again. That would be best to know and ask when contacting NJH.
For those of us that do not have pulmonologists well versed in Bronchiectasis it is well worth the trip to know all they are able to test for in such a short time. Locally it would take months and months of appointments to have all the tests they do to understand each persons situation via the tests. Many local pulmonologists do not do, arrange, for all the tests that NJH does to understand each patients health situation. I went because my local doctor was doing NOTHING and I knew that visit to NJH was needed.
Much also is learned by reading the different information on this site, Mayo Clinic Connect.
Barbara

I was bedridden within a week when I went on the Big Three. After consulting my pulmonologist and Infectious Disease doctors I spent a week as an out patient about 3 years ago NJH. They did every test that was needed. The only thing new they found was that I have GERD. After all of that they told me to nebulize with 7% and sleep on my left side for the GERD. I am slowly getting weaker but my pulmonologist does not add anything for my treatment. My Infectious Disease doctor said there was nothing he could do since I had been to NJH. None of them has suggested a vest.

So they had nothing more they could do like prescribe a different set of meds that you might tolerate? Are you not on any meds now and only doing the airway clearance and nebulizing? That is what I am worried about if I go to NJH. I'm not sure it would be covered by my insurance and if not, it would be very expensive according to their financial department who I spoke with a couple of days ago. I wouldn't want to go and then be told after numerous tests there was nothing else they could suggest. So sorry to hear they haven't been able to help you more Linda. Thanks so much for sharing your experience.

Good Morning Linda 1334. There seems to be a general misunderstanding about NJH based on statements made by people who havent been treated there so I am hoping to clear up a few things that might assist you with your decision about being treated at NJH. There is the clinic and there is also National Jewish Hospital which is down the street. The clinic of course handles the lung issues (also cancer, RA and others) and all of the testing, visits with the specialists etc are done there. There may be a procedure that would have to be done at the hospital but most everything is handled at the clinic. I was diagnosed with MAC and bronchiectasis in 2019. The MAC is gone, 2 treatments of 18 months each needed to get the job done, and I go in annually to the pulminologist now. NJH is the best there is. I used to live in Colorado but now I am in South Dakota and drive down for my annual. Everybody has to make their own decisions about who treats them but I would not base my decision not to be treated at a world class facility based on one persons negative response. My treatment there has been outstanding, thanks Dr. Daley and Dr. Goldstein, and I feel fortunate to have been treated at a gold standard facility. I do wish you the best.