MAC again

Hi Susie, I am in the UK too. I had MAC and abscessus in 2022. I was on the horrible trio of antibiotics. I was clear for a year and the abcsessus is back. I was not aware of the potential side effects I was told to take all 3 antibiotics first thing every morning. I felt so ill, lost my appetite and 2 stone in weight. I had to trial a few different anti sickness meds and finally got given Ondansetron - it was a life line. I had not been told about taking probiotics which might have prevented me getting recurrent thrush. I was not told about airway clearance either. I am curious to know if you were given more information. I asked lots of questions but was told that very few people get side effects. Like you it was not good for my mental health. I took 6 months off work but had to return. I survived but have had to go part time very alien to me after 35 years as a primary teacher. Not the ideal environment to work in as exposed to so many germs. This year I have had no time off but there were days when I should have been at home. I do not know if I can do treatment again. I feel ok but cough a lot some days but I think doing airway clearance daily helps. I have pain in my lungs and when I take paracetamol 4 times daily I am not too bad. My bladder was affected too think the rifananpicin caused that. I was so thrilled when treatment stopped after 14 months and I never thought it would come back so quickly. Appointments get cancelled and I have underlying bronchiectasis too. I never smoked and I have always been healthy and full of energy then bang your life changes drastically. Sorry for rambling but it is lovely to hear that we are not alone. I have watched webinars about NTM and do lots of research. I do not know how you coped with 3 years of treatment - well done! If you don't mind me asking do you work? So much information on here it is great and we must remain positive. Not everyone reacts badly to antibiotics. Wish you well

Hi can you elaborate on rifampicin affecting the bladder please. Since starting on the big 3 3 months ago I am having some urinary incontinence. Dr says not from drugs!!!!!

I started to get what I thought were UTIs but every test I had came back negative. I had to get up at least 5 times every night to empty my bladder. It was interesting when I took the rifanpicin it took about 2 hours for my urine to turn orange. There are studies to suggest that rifanpicin is not needed in the regimen. My bloods showed that my kidney function had deteriorated too. Since stopping the big 3 I have had to take Vesicare for bladder irritation. Annoying as those tablets cause dry mouth but I no longer have the urgency to go to the loo. It is worth doing lots of research about the side effects associated with these antibiotics. I wish you luck and hope you continue to do well on the meds.

Thanks for the reply. Were you having this problem from the get go or after long term use?
Do you have to take the one for bladder irritation all the time now?
My urine turns orange very quickly too I try to drink lots of water throughout the day to wash it through quickly. Best regards and good luck to you, hope it never comes back!

Hello Shifra - Everybody is different, with their own physiology & other medical conditions to consider. Was the return of MAC diagnosed with multiple sputum specimens, or is this an assumption based on symptoms? I would be sure the MAC showed up in multiple cultures, and that sensitivity tests were conducted before I even considered the meds a second time. There are people on this list (like Terri) who have worked out alternative regimens with their doctors. Make sure you have a pulmonologist and/or infectious disease specialist who is well-versed in MAC on your treatment team. Good luck!

Hi Sue, just wondering if it is safe for me to get my Covid booster later today.i am growing abcsessus and avium at the moment but I am not on treatment. I am coughinh up sputum which is slightly green but I have no fever. I asked my GP and they said to ask the pharmacist who is giving me the jab. I am quite anxious about this. Any advice? Thanks

Like many others here, I have consistently gotten my immunizations through the time I had MAC, because I want to eliminate or reduce as many other risks of illness as I reasonably can. My docs were fully in agreement with this.

@scoop, @pacathy, @becleartoday and others, what have you done?

Did you ask your pulmonologist or ID doc?