Jessica

Jessica

Hello again, Jessica here.It is now almost the end of twelve weeks of NTM treatment with the three antibiotics and inhaled Arikayce. I continue to be terribly hoarse but try to ignore it as much as possible. Coughing, and unpredictable stomach continue.
There was some new info that I received from a pharmacist at INSmeds that I want to share. She said that sometime during this one year treatment, after I have three clear culture conversions, that it is recommended by Arikayce to continue for another year after the three clear cultures. THAT REALLY EXTENDS THE TIME! This was news to me and I wasn't too happy about it.
Has anyone else heard this same info.?
Right now, I'm not willing to add any more time on to the one year, as I was told. Just can't do it. Not being able to talk and all the other side effects are too much to handle for more than a year.
Are there others like myself who are hearing this info.?
It is unknown if any of the test subjects are continuing with all the meds, as recommended for longer or they stopped after the one year. It is also not known if only the Arikayce was recommended, alone, or with the other three antibiotics. This was truly a shocker!
Any input on this?

5 hours ago

    nyzki

    nyzkianswered the question What is pseudomonas? Has anyone experienced pseudomonas? If so, what was the treatment?

    I have ongoing Psuedomonas , it has colonized in my lungs , No one knows how long it has been in my lungs. For now it is being kept in check with Tobramycin 300mg 2 x a day every other 28 days.
    Ksmiles123MerryKandyand 5 others also answered the question Ksmiles123and 7 others also answered the question

    5 hours ago

    nyzki

    nyzki

    Hello
    I am new to this site, I am a 54 year old female who was first diagnosed with Bronchiectasis at the age of 26. I also had a lobectomy at 26 . I am dealing with infections most of the time. I take Tobramycin every other 28 days twice a day to treat Psuedomona arigunosa that has colonized in my lungs. I recently had a heart attack and was going to be receiving a stent for a blockage of one of my heart arteries . Thankfully the blockage fell out as they were attempting the stent procedure. I sleep with 3 to 4 litters of condensed O2 at night to help with the sleep Apnea as well. I am currently also on Duo Neb and Hypertonic solution a few times a day which I nebulize . I also have The Vest which helps loosen the mucus which plagues me daily. Exercise has become difficult for me since my O2 sats drop at any vigorous activity. I also have Haemoptysis happen from time to time as well.

    I am doing the best that I can but, it seems lately that bad things just keep happening. I am also getting over having the Shingles for the first time in my life. I will be going to the Pharmacy after this goes away to get the vaccine . I don't ever want to have this back for now I am on a antiviral. Last year I was, hospitalized with Pneumonia for about 4 weeks. This is another infection that has left its mark on my lungs. as my breathing has become affected by its aftermath. I am trying to keep my self as healthy as possible. But depression and anxiety as well as stress is taking its toil on me. It is most difficult on my partner who has had to watch this disease put a tremendous strain on us over the years. I just needed to let go of what has been with me for so many years . It is nice to know that there are some support groups out there for people like us who have this debilitating disease

    thanks nyzki

    5 hours ago

      nyzki

      nyzkireceived the badge Getting started

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      5 hours ago

      Ksmiles123

      Ksmiles123

      Hello! Are you a positive thinker?
      It can be very challenging to be positive when not feeling well for an extended period of time. As stated in the article below “Being a positive thinker doesn’t mean to ignore reality ...”. The article offers a few tips on being positive.
      We are fortunate to have new therapies in the pipeline which were not in existence a decade ago.
      https://www.verywellmind.com/how-to-become-a-positive-thinker-2794770

      18 hours ago

        Ksmiles123

        Ksmiles123

        Hello! Holiday greetings to members who celebrate Easter or Passover this weekend. I hope that you have a pleasant day! If you are not feeling up to par, please have Hope since this is the season of Hope.

        1 day ago

          Ksmiles123

          Ksmiles123http://time.com/5574184/longest-flu-season-decade/

          2 days ago

            Kandy

            Kandycommented onFDA Workshop: Development of Antibacterial Drugs for the Treatment of Nontuberculous Mycobacterial (NTM) Disease

             With bronchiectasis my pulmo decided also to have me take zpak 3 times a week to control any infection and also helps with inflammation....

            4 days ago

            John Linnell

            John Linnellcommented onFDA Workshop: Development of Antibacterial Drugs for the Treatment of Nontuberculous Mycobacterial (NTM) Disease

             Great information. Lending my own anecdotal story....the azithromycin I take as a maintenance med helps reduce my mucus production immeasurably. ...

            4 days ago

            Bret99

            Bret99

            Patients should always feel comfortable with their physician. https://www.healthline.com/health-news/what-if-your-doctor-shows-no-compassion

            4 days ago

              Ksmiles123

              Ksmiles123Hello! It is important to monitor how our nutritional choices impact our energy levels throughout this holiday season.https://blogs.webmd.com/food-fitness/20190412/what-are-ultraprocessed-foods

              4 days ago

              Ksmiles123

              Ksmiles123commented onFDA Workshop: Development of Antibacterial Drugs for the Treatment of Nontuberculous Mycobacterial (NTM) Disease

               Gretchen,Thank you so much for sharing this information. Have a pleasant day!...

              4 days ago

              Ksmiles123

              Ksmiles123https://www.webmd.com/hepatitis/ss/slideshow-surprising-liver-damage

              4 days ago

                Gretchen

                Gretchen

                As the Easter weekend approaches, are you making plans or continuing old traditions? What are some of your favorite things to do? Make sure to take care of yourselves and not overdo it with busy schedules and multiple obligations. With fatigue being a large aspect of any chronic illness, try to preserve your energy and tend to your own needs.

                5 days ago

                • Jane MartinThat's a great reminder, Gretchen! Here's something else to think about...

                  Sometimes when your lungs are compromised, other systems have to work harder. If you have been diagnosed with (congestive) heart failure you most likely tend to retain fluids. This is most noticeable in your feet, ankles and lower legs, but sometimes it can overwhelm your entire system and be in your lungs too. Heart failure is very treatable, with a reduced sodium intake as a key part of everyday treatment. As wonderful as it may be, that Easter ham can be salty, so please keep that in mind this weekend. 4 days ago

                • Ksmiles123Jane,
                  I agree that holiday and long weekends are very tempting . We must continue on working on our daily rituals, self care everyday in order to feel as well as we possibly can.3 days ago

                Gretchen

                Gretchenadded a new article FDA Workshop: Development of Antibacterial Drugs for the Treatment of Nontuberculous Mycobacterial (NTM) Disease

                This blog post was written by Gretchen McCreary, Research Coordinator, COPD Foundation

                The Food and Drug Administration (FDA) held a successful workshop on April 8, 2019 entitled, Development of Antibacterial Drugs for the Treatment of Nontuberculous Mycobacterial (NTM) Disease. The workshop panelists included experts in their fields of NTM and Patient-Reported Outcomes (PROs). The goal of the workshop was to discuss clinical trial design related to...

                5 days ago

                Ksmiles123

                Ksmiles123Hello! Interesting research article below.https://cysticfibrosisnewstoday.com/2019/03/18/virus-can-help-treat-infections-in-cystic-fibrosis-patients-study-suggests/

                5 days ago

                  Ksmiles123

                  Ksmiles123

                  1 week ago

                  Ksmiles123

                  Ksmiles123

                  Hello! How are you feeling with all the fluctuations in the weather?
                  Does not feel like spring nor Easter Week today .

                  1 week ago

                    Kandy

                    Kandy

                    Daughter just brought two new honeywell air cleaners from Manards. We got them going. My old one quit it lasted for years. Then we ordered window filters for them while they are open. I like air coming in till the air conditioner goes in.

                    1 week ago

                    Made Pramana

                    Made Pramana

                    I just finished doing yoga with a yoga community. It was really good. 🙏 Have a nice weekend.

                    1 week ago

                    Ksmiles123

                    Ksmiles123Hello! Do you deal with chronic sinusitis or seasonal sinusitis?https://www.webmd.com/allergies/ss/slideshow-sinusitis-dos-and-donts

                    1 week ago

                      Ksmiles123

                      Ksmiles123Hello! Below are tips on dealing with social isolation due to not feeling well.https://themighty.com/2018/02/coping-with-loneliness-isolation-chronic-illness/

                      1 week ago

                        Ksmiles123

                        Ksmiles123https://www.everydayhealth.com/depression-pictures/are-you-lonelier-than-you-realize.aspx

                        1 week ago

                          Ksmiles123

                          Ksmiles123Hello! Do you experience feelings of loneliness due to social isolation related to your medical issues?http://fortune.com/2016/06/22/loneliness-is-a-modern-day-epidemic/

                          1 week ago

                            Ksmiles123

                            Ksmiles123https://www.everydayhealth.com/gerd/guide/symptoms/

                            1 week ago

                              Bret99

                              Bret99Apps can be very helpful but also do some research! Many behavioral health apps are not backed by any scientific research.

                              https://medcitynews.com/2019/03/research-shows-most-consumer-behavioral-health-apps-have-no-scientific-backing/

                              1 week ago

                                Ksmiles123

                                Ksmiles123https://www.webmd.com/asthma/ss/slideshow-breathe-better-home

                                1 week ago

                                  Ksmiles123

                                  Ksmiles123Hello! Do you understand the difference beftween a drug side effect and a drug allergy?https://blogs.webmd.com/public-health/20190401/side-effect-or-allergy-how-to-tell-the-difference

                                  1 week ago

                                    Gretchen

                                    Gretchen

                                    I am attending the FDA Public Workshop today on the Development of Antibacterial Drugs for Treatment of NTM Disease. Looking forward to this discussion. Your patient voice will be represented in the survey you took in March. You can receive updates on the Workshop here: https://www.fda.gov/Drugs/NewsEvents/ucm629494.htm

                                    2 weeks ago

                                    Ksmiles123

                                    Ksmiles123https://www-m.cnn.com/2019/04/05/health/flu-numbers-universal-vaccine-cdc-nih/index.html

                                    2 weeks ago

                                      Ksmiles123

                                      Ksmiles123Hello! Do you experience more dental issues since taking more medication? Dental health is so important for the long haul.https://www.webmd.com/oral-health/diet-oral-health?ecd=wnl_wmh_040619&ctr=wnl-wmh-040619_nsl-Bodymodule_Position4&mb=BV9hlHMDfjVlJNmGRIb%40PxXFE73IOX1cnRFKG4M8oE4%3d

                                      2 weeks ago

                                        JudyH

                                        JudyH

                                        I was diagnosed w/NTM 8 months ago when first sick on vacation to Ireland. TB was first suspected—but changed to NTM—-abscessus was noted on a specimen while in Ireland. I have not been treated because I don’t have anything conclusive to treat at least from sputum specimens-(Bronchoscopies —specimens sent to NJH in Denver. I was there 1/23/19—-2/2/19 I have a 6x8 mm cavity RUL I have lots of thick mucous. I do Saline neb’s 2x/d—and I try to get exercise to help move mucous—- but I am so tired —-I cough a lot—especially at nite. I want Rx—But Drs can’t prescribe without evidence. I do have 3 more specimens “coming along—-so I hope and pray some species is found soon. NJH was wonderful—but I need a specimen to back up this debilitating illness I know I have—so I can fight whatever it is!!! Thanks for listening—-any comments would be appreciated—-I try to keep my attitude positive. I am sooooo tired of coughing up awful stuff!!! Hope to hear from people with experience❤️

                                        2 weeks ago

                                        • Click to View All Comments4 comment(s) -
                                        • Ksmiles123Hello Judy,
                                          Welcome to the site. I am so sorry to hear of your recent issues. Have they attempted induced sputum specimens with a saline nebulizer?
                                          Yes, the ongoing cough can be exhausting both physically and emotionally.2 weeks ago

                                        • JudyHI have lots of sputum, however evidently the bugs are hiding from the lab —at NJH I was induced with saline but so far only 2 & 10 colonies of abscessus showed up on 2 specimens along with M Chimera and an opportunistic bacteria. I am hoping in the next 2 weeks maybe something conclusive can be ordered for my treatment. The Drs know I am sick—-but can’t order med(so toxic) unless there is evidence! It is frustrating! I want to feel better🌝2 weeks ago

                                        • Ksmiles123Hello! I can only imagine how frustrated you are at this point in time. Two weeks may feel like forever, but try to take one day at a time. Just do what you absolutely have to do over the next few weeks and nothing more. You will eventually get the right treatment and get through this. We are here for you. Please check in frequently.2 weeks ago

                                        Ksmiles123

                                        Ksmiles123Hello! An interesting article with startling statistics.https://www.beckershospitalreview.com/quality/21-of-hais-waterborne-study-finds.html?origin=qualitye&

                                        2 weeks ago

                                          Delia

                                          DeliaHi all, Happy Friday! Just wanted to let you know that we have posted the Facebook Live interview on the 'What is NTM?' page linked below. For those of you who missed it, we hosted a live discussion with Dr. Addrizzo-Harris (a pulmonologist and professor of medicine at NYU Langone Health) and an NTM lung disease patient about the importance of early diagnosis, risk factors, signs and symptoms, and living with the condition. The interview was sponsored by Insmed and streamed on Facebook. You can access it on the page linked below.

                                          https://www.bronchiectasisandntminitiative.org/NTM-Lung-Disease/NTM-Resources/What-Is-NTM

                                          2 weeks ago

                                            Ksmiles123

                                            Ksmiles123Good morning! Are you managing your GERD symptoms?https://www.everydayhealth.com/gerd/preventing.aspx?eh_uid=76390480&slot=1&xid=nl_EHNLhealthyliving_2019-04-05_16488099&utm_source=Newsletters&nl_key=nl_healthy_living&utm_content=2019-04-05&utm_campaign=Healthy_Living

                                            2 weeks ago

                                              Ksmiles123

                                              Ksmiles123Hello! Are you dealing with aspergillis?https://www.aspergillus.org.uk

                                              2 weeks ago

                                              • KandyA stand in dr told me I had he thought aspergillus when I was in hospital for strep pneumonia in 06. The fungal med started a reaction of my throat. I stopped the pill he chewed me out for 2 days. When I seen my regular pulmo he said he thought that I never had it. My new pulmo 2014 said showed antibodies for it. He didn't treat it as you can pick it up in the air. 2 weeks ago

                                              • Ksmiles123Kandy,
                                                Glad that it did not cause a problem for you.2 weeks ago

                                              • Ksmiles123Kandy,
                                                How are you doing? Has the storm affected your area?1 week ago

                                              Merry

                                              Merry

                                              I've seen a lot of debate in another support group about how to clean showerheads in order to kill NTM. Happy to see that vinegar seems to top bleach, since breathing bleach fumes is crazy bad for us.
                                              https://www.sciencedaily.com/releases/2014/02/140225101501.htm

                                              2 weeks ago

                                              Ksmiles123

                                              Ksmiles123

                                              Hello! It may not feel like spring.... yet, it is here. Below is an article on tips for respiratory patients during the spring season.https://www.breathelivefit.com/blog/11-tips-for-spring-for-people-with-lung-conditions

                                              2 weeks ago

                                                Ksmiles123

                                                Ksmiles123

                                                Hello! Below is an update on The FDA and drug/ antibiotic development.
                                                https://www.fda.gov/Drugs/NewsEvents/ucm629494.htm

                                                2 weeks ago

                                                Brandon

                                                Brandon voted on Patient & Caregiver Support

                                                Gave a thumbs up for a blog post!

                                                2 weeks ago

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                                                Medical Advice

                                                It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. While we encourage individuals to share their personal experiences with bronchiectasis and NTM, please consult a physician before making changes to your own disease management plan.