NTM Northwest Support

A Pacific Northwest support group for sufferers of Nontuberculous Mycobacterial (NTM) Infections and Bronchiectasis

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#1 2018-07-25 19:32:18

CynthiaF
Support Group Chair
From: Bellingham
Registered: 2016-05-30
Posts: 150

Portland NTM Meeting June 6, 2018

Please welcome new members Jean Scheroot and Peggy Wobbrock to our gang.  On June 6th we met at the OHSU Center for Healing down by the Portland waterfront. Members present were Laura Volkman, Kristine Lytton, Robin Born, Casey James, Mary Fulwilly, Jean Scheroot (and Gregory), Peggy Wobbrock (and Larry), Nancy Rothwell and myself. Also attending were Megan Wardrop,OHSU Research facilitator and Dr. Luke Strnad, newest member of the OHSU Infectious Disease department.

After quick 'round the table' intros, Dr. Luke Strnad gave us the skinny on OHSU research efforts, both current and upcoming. These include

* 2 drugs vs 3 drugs comparative study being headed up by Dr. Emily Henkle which drops Rifampin from the typical 3 drug cocktail for MAC.  This is the drug with the worst side effect profile so this should help determine how important it is to stick with three. Just recently funded by PCORI, the Patient Centered Outcomes Research Institute.

* Clofazmine(off label use study), 6 months in duration of single drug vs placebo, looking at efficacy and safety in treatment of MAC. Roughly 200 patients being studied at three sites:  Natl Jewish Health, Tyler Texas, and OHSU. To be eligible, participants must have MAC lung disease, positive sputum cultures for MAC, and not currently taking antibiotics for MAC. Still enrolling and need more participants!

*New drug by INSMED, liposomal Amikacin for inhalation (LAI) being studied for efficacy, safety and tolerability in treatment against Mycobacterium abscessus. 

* Inhaled gNO (gaseous nitric oxide) was originally used for pediatric pulmonary hypertension. Testing if it can kill Pseudomonas aeruginosa.  Must be closely monitored to be sure gas does not accumulate too high a concentration in blood so must be administered at a facility.  Requires being at facility several times every day for a month. Not likely to be a good fit for a patient unless struggling with chronic MDR (multi-drug resistant) pseudomonas aeruginosa infection.

* Dr. Barker, pulmonologist/ treats bronchiectasis, is in early stage research...looking at bronchiectasis and pseudomonas? Measuring efficacy of Coliston? which is an inhaled antibiotic. My notes are sketchy on this.  Believe he is doc at OHSU.

Interested in more info? Check at ClinicalTrials.gov or check out the newly re-vamped NTMir.org website.  Their section on research is far more user friendly than before.

A lively question and answer session followed, Nancy and I had several other topics on the agenda but decided to yield to allow ???s as long as Dr. Strnad was willing.  He graciously stayed the full two hours answering queries.

*Discussion started by Peggy about developing allergies to antibiotics. In her 30's she developed an allergy to Bactrim, 40 years later she was able to take it again. She recently had a severe reaction to Cipro, had to discontinue and was told unlikely she would be able to take it again.  Dr. Strnad said not unusual for allergies to occasionally disappear so don't give up hope. My personal experience...I suffered severe nausea and vomiting a few years back when I took Bactrim for an exacerbation.  The only other drug that my steno bug displayed sensitivity to was Levafloxin, which has a nasty potential side effect profile so I was rather dismayed. Took the Levafloxin and had some mild rash and tendon pain, but nothing severe.  Still, the following year when I had another exacerbation I chose to try the Bactrim again (ate some marijuana edibles to help with nausea) and did fine. Have taken Bactrim one other time since then, without the edibles, and had no problem.  Perhaps the issue of allergic reactions to drugs is yet another murky area.  There is a degree of relative danger...throwing up on Bactrim not the same as very serious rash with Cipro. The only thing I know for sure about side effects is they usually crop up a) on the weekend or b) when your doc is on vacation.

*Do supplements help? He mentioned Vitamin D3 as one supplement believed to be important for NTM patients.  Many have too low concentration (have blood tested) and it is suspected to help in boosting one's immune system.

*Asked if probiotics are useful, Dr. Strnad said probably, but also that 'natural' medications don't kill bacteria though some might improve one's general health.

*Can we inject good bacteria into our lungs? Univ of California San Francisco, where Dr. Strnad completed a fellowship in Infectious Disease, did some DNA based work into what is in our lung microbiome. Still in very early stage of figuring out what is what.

*Bacteriophage for controlling infections? Texas A&M doing some work.

(from Cynthia... I am very excited about this line of research.  My crude understanding of these forms of life: bacteriophage are viruses that kill bacteria, and are widely scattered throughout the natural environment.  There are thousands of strains and each one targets only a few specific bacteria. They were used and studied around the globe until the rise of antibiotics mid-century. Thereafter treatment and research dollars were focused almost exclusively on antibiotics everywhere except in eastern Europe, particularly in the republic of Georgia which still uses bacteriophages for treatment. You  may have seen the article in Time some months back that touted bacteriophages as a last resort for people with multi-drug resistant infections. Copy this link to your browser if you want to read the article:  http://time.com/5068513/superbugs-are-n … e-to-fight )

*NTM bugs like our lungs far better than our mouths or throats...

Casey James, who came all the way from Bend, had to leave a bit early.  She was going to report on the NTM/bronchiectasis conference she attended in San Diego in mid-May.Rather than take away from Q & A she said to keep tuned...the conference was taped and will be on the web soon.

Was so wonderful to actually meet more members. Megan said if someone in the Portland area wanted to have another get together next year she would be happy to work with them and arrange a room.  She would like to sit in once again.  Meeting real patients facing the disease makes her work more meaningful.  My guess is Dr.Strnad would be willing to return as well.
Best wishes to you all,

Cynthia in Bellingham and Nancy in Colfax

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