NTM Abscesses: Improving slightly on these meds

So many meds. Is your husband at home? Hard on him but I’m glad it works. Wish you both patience and strenth

Penn patient as well. It has been a journey. I’ll be praying for your husband. I go to my ID doctor at Penn on 3/24. Hoping for signs of improvement and grateful for each day. All the best to you both.

Yes, we’re both retired and at home. Took a while to get into the IV routine; now that we’ve got the schedule working its ok… we do what we have to do to make it work… Thanks for your good wishes.

The Penn doctors are amazing. His ID is Dr. Palacio and the pulmonologist is Dr. Rey. Only hard part is driving to and parking at the Perelman Center - it’s nearly a full day. Both docs see him on the same day so that helps.

@tomed
Hi, I am in the same boat but with Temple. IV's had to be stopped due to hearing loss on amikacin. How is your husband doing a year later? Right now I am on Nuzyra and Clofazimine with a hold on Arikayce and not doing too well. May have to go to Penn for second opinion.

Howdy. Hope you are doing well. This is a really rough infection to get rid of. Edward is getting close to finishing a full year on Arakacin (inhaled), Nuzyra (1x/day) and Clofazimine (1x/day). As far as we and the doc’s can tell, he’s been clear of the infection since last May. The CT shows no infection. The Bronscioscope showed no infection. Labs, including sputum cultures, are clear as well. He has a follow up later this month with a colleague of Dr. Palacio (who is on maternity leave) and we are hopeful that Edward can be taken off the three antibiotics soon. It is a challenging regiment, but we have made it work. Edward really doesn’t want to go back to the home IV meds so he’s been really good about everything. Dr’s Pelacio and Rey have been an amazing team. Very happy with Penn (except for the traffic around the Perelman Center; we’re out near Phoenixville so it’s a treck into the city). Dr. Rey practices at Penn, Children’s and the VA. They are really approachable and have taken lots of time to answer every question we’ve had. Feel free to connect directly if you wish.

I had NTN Cavitary mass of 3cm.I am a systematic and my lesion was found as an incidental finding on Chest X ray .I tried 5 antibiotics, one I.V for a week and became extremely sick and fragile ,I found the best surgeon here at NYU ,who removed my mass last week .Although I am elderly ,I am walking 5,000 steps a day and waiting for culture reports from lymph nodes removed .
My mess was completely encapsulated, and it was extremely doubtful that any of those antibiotics would ever have penetrated. I chose surgery in lieu of two years of complete torture without any insurance of success.
If indeed, there was some seeding or any bacteria in my lymph nodes, they will eventually grow at a slower rate, and I will have more years to live then if I just took antibiotics alone, or did nothing.,

@visions63
What does it mean systemic? How elderly are you? My absessus was found incidentally 3 years ago and recently diagnosed. I have no symptoms but if I do I like the idea of removing as much as possible. I am 73. What doctor are you working with and exactly what do you need to do now?

@tomed

Hi,
I am Lou and I have been on clofazimine, Nuzyra and Azithromycin for the past two months but now my insurance is telling me they will no longer allow me to use the nuzyra and the cost is extremely high. Do you know of any programs to help with the cost of nuzyra? Any information would be greatly appreciated. I was so grateful to be taken off the Imipenem and Tigcycline IV's as they were making my liver enzymes skyrocket. The new cocktail of meds has everything back to reasonable levels. I will keep you in my prayers.

Lou

Hey Lou. Nuzyra’s website has a patient assistance program. You might check it out. https://www.nuzyrahcp.com/

It took a while for Medicare/tricare to approve Edward’s Nuzyra, The doc had to build a case for using it since it isn’t a normal formulary drug. Penn Medicine’s Specialty Pharmacy got involved and they really pushed to get the medication. You may need to press your doctor or pharmacy to build the case that this is needed.

Navigating insurance for these meds is a challenge.