Starting the Big 3 - terrified
I am starting the big three next week and am terrified of the side effects and also of the dangers of my preexisting conditions. For instance ethanbutal causes irreversible blindness and clarithromycin causes debilitating neuropathy. All three cause unrelenting vomiting and diarrhea. First question is does your eyesight come back after discontinuation? How many have to stop because of these horrendous side affects? Lastly, I already have heart disease, kidney failure and diabetes. Given these conditions will the big three kill me? I read that clarithromycin causes heart attacks. My infectious disease doctor was hesitant to start treatment because of my conditions but decided we have to attack the MAC. I am going out of my mind terrified. How often do you have to be hospitalized because of these side effects and for how long?
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
We are all different, but I have been on the Big 3 antibiotics for over two months, and so far the side effects have been minimal, mostly dryness. The benefits have also been minimal, a bit less coughing at night. I have the cavitary form, so my docs want to stay aggressive, at least for now. If you do experience concerning side effects, your medical team might be able to make some adjustments with the meds. Best of luck to you.
My heart reaches out to you. I can hear the panic in your written words. Like Sue, a volunteer mento connected with this Connect web site and as a retired nurse myself with bronchiectasis I too strongly urge you to take several deep breaths. This is something that you should approach as a Team. You mention an ID doctor is recommending the treatment and that you cannot see a pulmonologist for 3 weeks. It almost sounded like you have not seen any pulmonologist in the past. Have you talked to your ID doctor about these concerns you are having? It is a condition that is not usually considered life threatening. Postponing until you mine is at rest can't hurt. It sounds as though you have been researching the internet on your own and have latched on to the worst of the worst side effects. Be careful. A lot of information on the internet while possibly true often does not tell the whole story such as the percentages or length of time before you might go "blind". I personally think that with good coordination of care from a team you would be able to spot changes before things get out of control. Most things do not happen overnight. Above all make sure you get involved with a group of physicians who approach you as a team. And start reaching out to others in your community, I have from experience that while I too tend to think I don't have any friends I find people around me are more willing to help than you might think. I recently had a conversation while playing bingo with some friends, and the woman sitting next to us piped up that she loves to drive and would be glad to drive me clear across the state! Sometimes we fail to recognize angels amongst us just because they have no visible wings. HUGS and PRAYERS to you "doberdoo".
Hello, As @bayarea58 said, there are many reasons to approach treatment with caution.
The three best are that a short wait to see the experts is probably not a big risk, that you may need help dealing with medication sensitivities and that your pulmonologist's approach suggests that she is not expert at dealing with Bronchiectasis-not an indictment as very few docs are.
What would I do? Wait the month while doing airway clearance. Using the new inhaler is up to you. It is the generic version of Symbicort, and contains a corticosteroid, so it may help with inflammation in your lungs. I use it and find it very helpful.
I was diagnosed with the bronchioscope. I would do it again in a heartbeat. It was nothing. I can't give a sputum, so I am glad it is something I can do. My pulmonologist is adamant that I do not take any steroids, even though I know they will help me with my tight chest. I'm not sure of the reason. I need to ask him.
What color is your sputum? Is it clear or green or brown?
I took was diagnosed with a broncoscope. The cultures grew from the lavage. Mucus is clear and foamy