Has your doctor ever stopped your antibiotic therapy?

@sheila7a Dr. Hewitt from NJH has a video where she briefly mentions the side effect of lowered white blood cells to the antibiotics. She references it to say before doing any more complicated testing for “bad things” just go off the antibiotics and recheck first, as lowered white blood cells is a known side effect of treatment and not necessarily a sign of something more nefarious, particularly if one’s white blood cell count was fine before they started the antibiotics. I don’t recall her saying if it’s one of the antibiotics or the combined effect of the antibiotics, or what happens next in terms of treating NTM but she did raise the specific scenario of lowered white blood cells as a known side effect. Not sure this is helpful, but at least you know you are not alone on this.

👍

I have bronchiectasis and Mac. My doctor stopped the Big 3 after 6 months because I developed side effects (hearing loss and tinnitus). That was 6 years ago. I’ve been faithfully doing airway clearance twice a day since then. I started on 3% saline and have been using 7% for 5 1/2 years. My chest CTs and sputum tests have fluctuated over the last 6 years but generally are not worse than they were when I stopped the medication. I am still very careful about getting enough rest, eating well, exercising and I try to minimize exposure to environmental risk factors and sick people. It is all a huge lifestyle change from my “pre-Mac” life.

Both my CT and sputum tests have improved a lot in the last year so I will continue with the airway clearance and no medication. It is time consuming and expensive (no coverage for saline in Canada) but it keeps me feeling well. My hearing loss and tinnitus did not improve despite stopping the meds the same day that I noticed hearing them.

I wish you luck on your journey. You will get a lot of helpful information and support from this people in this patient forum.

I have had three oral meds and amikacin for a year. Recently My EKG shows prolonged QT so I stopped med for 2 weeks and reduced dose of clofazimine to 50mg, Now my EKG is normal. My liver enzymes are also slightly elevated so I am going to discuss with my doctors to stop meds for a while. So far I feel fine except a little bit chest tightness and weakness in legs. If I stopped med for a day, these symptoms will be improved. I hope I can finish 18 months treatment.

My doctor had me 200mg of clofazimine
The pink dye was coming out in my clothes,bedsheets and my face cloth was dyed pink. There was a pink residue in the back of my eye when see by the optician. This was after he nearly killed me with Ciprofloxacin. Now any warm compress makes my skin glow red and painful because of the small fibre neuropathy

200mg is too much unless you only take one medicine.

Exactly he had me on Rifapin/Azithromicin/Clofazimine and 4 months of iv Amakacin
The result was massive nerve damage effecting all body functions
And out of control muscle wasting. Numb arms and lower legs.Not able to digest food because of some kind of gut/gallbladder/pancreatic/liver damage. Probably a combination of all of them. I developed very bad foaming urine that they can’t tell me reason for.
I now weigh 38kg and still dropping despite eating like a horse .
Am I angry about it? You Bet.

I went off of antibiotics for MABs, after just 3 weeks. Though the side effects were horrendous, I went off due to NJH telling me my MABs count was 37, which is very low considering a count of 400 is considered high. My Dr there also told me they would not have started me to begin with. I was told if I went off all 3 antibiotics at once, that it shouldn't affect me starting back again. If I need to go back on, at least the doses would be greatly reduced. My local ID had me on daily inhaled Arikayce, 1200 mg Linezolid, and Nuzyra. NJH would recommend 3 times/week Amikacin, 600 mg Linezolid, and maybe Clofazimine (not sure of dose). I was so sick from both the Nuzyra and Linezolid-so, I like the new potential doses. Also, the daily Amikacin made me lose my voice-down to a whisper. They had suggested inhaled IV Amikacin 3 times/week. Just an FYI: to determine the Linezolid dose, they did a trough blood draw and then 2 additional blood draws at 2 and 6 hours, to determine how fast the drug was metabolized in my system. Apparently, some people can drop down to 2700 mg/ week!

I was diagnosed with MAC and bronchiectasis earlier in the year and started the antibiotics in May. I had to stop after 2.5 weeks due to not being able tolerate the side effects. My doctor is having me use the Levalbuterol inhaler, nebulize 7% saline and use the acapella device twice a day along with doing airway clearance. I feel good and no longer have the periodic coughing fits. I do still feel a heaviness in my chest occasionally and sometimes will hear a slight rattle at night if I’m not propped up when sleeping. I’m hopeful that continuing with this routine, that the heaviness and rattle will go away and that I can avoid having to go on medications once again. Wondering if increasing the frequency of the Levalbuterol inhaler is needed to help with those symptoms of chest heaviness and the occasional rattle or is that a symptom that doesn’t go away with this lung disease? I was also prescribed Symbicort inhaler to use after nebulizing the saline which I did for awhile, but recently stopped after reading here that it’s normally only used if you have asthma or COPD. Appreciate any help that can be provided.