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

Posted by linda1334 @linda1334, Jul 11 2:20pm

I was diagnosed with MAC in August 2022 and put on the big 3 3x per week. Initially I was okay other than gastro problems with the azithromycin but it wasn't all the time. However I started getting neuropathy and hearing loss. After 16 months, I couldn't tolerate the neuropathy any longer and had to get hearing aids so the doctor thought I was okay to quit the meds. Two months later I got a positive sputum sample. So now the doctor wanted to put me on azithromycin, rifabutin and Arikayce every day. I did the azithromycin the first week and it gave me gastro issues which I expected, then I added in the rifabutin and it got completely intolerable. I was bedridden and I had to stop. My new ID doctor (old one closed his practice), said I should try watchful waiting and diligent airway clearance. She is ordering a vest for me. However, my pulmonologist said I should consult a doctor at National Jewish Health. Has anyone else who could not tolerate the usual drug treatment gone to NJH? And if so, did they prescribe any different drugs for this that worked for you?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

winema | @winema | Jul 21 4:13pm

I'm also interested in any replies to your question about NJH.

linda1334 | @linda1334 | Jul 21 4:49pm

Hi Winema, As you can see, no one else has replied yet. I was hoping to get some information but I will contact NJH anyway to see what the process is for a consultation. Is that what you're thinking of doing? I had reactions to drugs as I stated above. Not sure if there is anything else I could take/tolerate. Fortunately, I'm not experiencing a lot of symptoms right now and I'm doing airway clearance every day to try to keep it that way. But it would be nice to find that there are some meds I could take if necessary. Have you tried the big three and any others?

ecoen | @ecoen | Jul 21 6:40pm

I went to Mayos in the fall of 2024 and they told me to start taking the Big 3. I was scared to as I already have hearing loss. I heard about NJH on this site so called and self-referred myself. They took me and I have had two visits - the first in January and the second in April. I was stable in April so don't have to take the Big 3 yet. But I do have some nodules. I use the Aerobika and have a vibrating vest. Prescribed 2x/day. I go back in September.

ecoen | @ecoen | Jul 21 6:40pm

And I love NJH. Feel like I have found the right place for me.

linda1334 | @linda1334 | Jul 21 7:20pm

In reply to @ecoen "I went to Mayos in the fall of 2024 and they told me to start taking..." + (show)

Thank you for responding! That's helpful to know.

robot | @robot | Jul 22 10:48am

I will be going to NJH at the end of August, because of so many exacerbations in the past 18 months. Levaquin, which is the drug of choice by my doctor, for these exacerbations, is always a wild card because of the possibility of tendon problems and the side effects are almost unbearable. Getting to NJH is possible with a doctors, referral and acceptance by them. The biggest obstacles can be having insurance pay for this visit, and the cost of travel and accommodations during that stay, not to mention the sheer energy it takes just to make this trip. I will share any knowledge I gain while I am there.

eileen86 | @eileen86 | Jul 22 10:16pm

I don’t know your age, but I understand a full National Jewish workup is covered by Medicare

I have heard very good things about the hospital.

winema | @winema | Jul 23 11:41am

In reply to @linda1334 "Hi Winema, As you can see, no one else has replied yet. I was hoping to..." + (show)

Thanks, Linda. I'm on the big 3 now, in the middle of my 6th week. The worst adverse effect is GI trouble: intense, sometimes prolonged (hours and hours) intestinal cramping after the first two weeks, often without much or any diarrhea. At one point, my doc suggested NJH, which prompted my question. I've changed the timing and order of taking each of the 3 and so far (fingers crossed!) that's helped. I live in Colorado, not that far from Denver, but just can't see spending a week in the hospital. So, I was hoping someone has been able to get a consult about new meds without all the re-testing and extreme inconvenience.

linda1334 | @linda1334 | Jul 23 2:09pm

In reply to @winema "Thanks, Linda. I'm on the big 3 now, in the middle of my 6th week. The..." + (show)

Good luck on the big 3. Glad to hear you've changed the timing and that helps. That's what I had to do when I took the big 3. I don't live in Colorado so the travel would be a big consideration for me and I don't know what would be involved in a visit for evaluation. You mentioned it would require spending a week at the hospital. Did someone from NJH tell you that? I was hoping the same as you with regard to getting info about new meds.

Shelly61 | @shelly61 | Jul 23 2:29pm

@linda1334 and @winema can you share what your med schedule
Is like. I have not started the Big 3 yet. Keep putting it off due to the possible side effects. What has been working for you?

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