Connect
Anyone feel like they're taking the medications forever?
I am new to this group and so glad I found a support group.
Unfortunately I have been taking the big three medications for MAC for two and a half years now. Been miserable with the stomach and bowel issues ever since. I have seen some suggestions on here with my doctors have never suggested but I will try them out and see if that helps. Otherwise my issues just run my life. I feel like I can't make any plans because I'll have to cancel them anyway. I've had to cancel doctor appointments for the same reason. I can't plan a vacation for the same reason.
I have been thinking of just telling my doctor I'm stopping them. But I've seen other people on this site stating to stick it out. But stick it out for how long - forever? That's what it seems like to me. I'm 75 years old and I see my life slipping away without me getting to live it the last 2 and 1/2 years.
Other people mentioned probiotics was I've tried that they didn't seem to help. Does anyone have any suggestions as to which probiotic might help me? Time of day to take the medications?
Is anyone on arikayce? My doctor wanted to start me on that but I read that incredibly long list of horrible side effects and I just didn't feel like I wanted to add that to my issues.
Feedback would be greatly appreciated!
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
@vg1950 Although I've not been on the antibiotics as long as you and have tolerated them quite well so far, I can relate. I have been taking them along with Arikayce for the past 17 months and continue to have positive cultures so no end in sight. I get very tired of the entire routine; nebulizing, cleaning & disinfecting equipment, doctor visits, lab tests, ct scans, etc. I am also concerned with being on these strong antibiotics for such an extended time period. With that said, I do want to beat this and so I am willing to try whatever is available. I've been on Arikayce for the past 16 months and no side effects. There are many others on this site who have had no problem with it also and many have converted to negative just a few months after starting. I think it's worth considering and if you have bad side effects, it can always be stopped. Also, the probiotic is important but must be taken at least 4 hours before and after taking an antibiotic to avoid having the antibiotics kill the good bacteria in the probiotic. I use California Gold LactoBif 30 (1 per day).
-
Like -
Helpful -
Hug
2 ReactionsThank you so much for the feedback! I really appreciate it! And it helps. Yeah the inhaler medication just seems so scary when they list a couple of the common side effects as being problems breathing and coughing up blood. That's what's scaring me away! But you're saying you've had nothing like that from taking that medication?
Again thank you for the feedback!
Maybe it is too personal to ask. If so I certainly understand. I am just research out where to go to get an opinion of whether treatment is necessary for me or not. I am looking into going to NJH also. My pulmonologist said treatment is normally 12-18. But I am hearing it can much longer. Do you know if that depends on. how severe the problem was before treatment. Or it is just what it is. Thank You
Well for me and my speedom samples keep coming back as positive for the bacteria growth. So as long as that keeps happening I have to keep taking the three antibiotic regimen.
I have build them samples coming back negative they're by not showing any bacterial growth then I should be able to get off the medications. But it has to show negative for several times in a row before that will happen.
Hopefully that helps a little bit!
@vg1950 When patients don't show improvement after 6 to 12 months, it is recommended that an Infectious Disease doc get involved and explore whether their specific strain of bacteria is resistant to the usual antibiotics, they may need to be changed. Has your pulmonologist consulted with an ID doc, or referred you to one?
Thank you, but I have been seeing an infectious disease doctor from the beginning. So he's totally aware.
@vg1950. We are all different, so your concerns are definitely valid. I personally have not had any bad side effects. When I first started, my voice was raspy but that went away within a couple of weeks. The trainer told me to always use the Albuterol inhaler 15 minutes prior to treatment to open airways and prevent a bronchospasm. Are you seeing an infectious disease doctor along with a pulmonologist? How familiar is your doctor(s) with MAC?