Ethambutol, Rifampin, and Cipro combination drugs

@pmmar1 Welcome to Mayo Connect, and in particular to our very active MAC & Bronchiectasis group. Treating MAC is an ongoing puzzle, as new strains are being identified, with more showing resistance to azithromycin/clarithromycin.

My own primary doc talked about creating "superbugs" over 10 years ago, when it seemed like many providers were prescribing "Z Packs" for every illness (some probably not even bacterial.) She told me Azithromycin is a "big gun" and should be reserved for when the common drugs don't work, but the convenience of the short use had everyone asking for it. Now, here we are with resistant strains. And it happens even when we personally never took the drug.

Can you tell me what your specific concerns are about Cipro?

Also, you tell me that you are newly diagnosed, has your doctor taught you about airway clearance, which is very important to help get the mucus (where the MAC grows) moving and out of your lungs? Many of use use a 7% saline neb to help thin the mucus and get it moving.

Finally, I see that like many of us, your weight is very low for an adult - this is something you need to address, as the effects of long term antibiotic therapy often cause gastro issues and loss of appetite. It might be a good idea to ask your pulmonologist for a consult with a nutritionist who can help you boost your calorie intake while following your preferred diet.

If you wander through the discussions in our group, you will find many helpful tips for coping. I look forward to visiting with you as you adapt to this new "lifestyle."
Sue

Thank you for your reply as it is much appreciated.

My main concern with Cipro is that, if I have read correctly, it is an antibiotic of last resort when used for MAC (along with the other 2). It scares me when I have read that side effects are more prevalent in people over 65: "associated with disabling and potentially irreversible serious adverse reactions that have occurred together, like tendinitis and tendon rupture, peripheral neuropathy, central nervous system issues."

Reviews of the drug have not been positive and I'm hoping I'm not trading one set of problems for another. If this drug combination of Ethambutol, Rifampin and Cipro doesn't work, my doctor may send me to an infectious disease doctor or to National Jewish Health.

I have a dry cough so mucus isn't a problem right now, although it was before the bronchoscopy and the antibiotics so perhaps the drugs are helping.

Thank you once again for contacting me.

Off and on, over the years, I have been prescribed Cipro for a GI issue. Years ago it was ok, with no side effects. But, now that I am older (70+), I experienced terrible leg pain after taking just one dose. Pain was such that it woke me up out of a sound sleep.
My dr took me off it immediately. If you research the side effects, it is well documented that the drug can cause tendon problems and damage to your nerves (which may be permanent). It is a very effective antibiotic but can be dangerous to certain individuals. This does not mean it won't work for you but be sure to report any side effects to your dr right away.

Thank you so much for your thoughts and suggestions. I will follow your advice.

Hello, Sue
This is an update from our communnication of April 10-11.

I shared with you the 3 antibiotics my pulmonary doctor prescribed: the Ethambutol, Rifampin, and Cipro (since the Azithromycin was ineffective for my type of MAC). I took all 3 together for a month, with the addition of the Cipro 2+ weeks ago. The past two weeks have been very trying for me with unwanted side effects.

I had a virtual meeting with my doctor yesterday and we decided I needed to go off all antibiotics, to wait until my next appointment with him in a month, and to use a flutter valve and nebulizer w/7% saline solution. We will decide what to do beyond my appointment with him, which may mean going back on antibiotics, perhaps two as opposed to 3.

Meanwhile, at your suggestion, I have made an appointment with my health system's nutritional services to discuss gaining weight. At age 78, on or off of antibiotics, I admit I need a higher BMI to fight MAC in the future. Thank you for pushing me in that directions.

Best wishes to all as we journey together.

Hi pmmar1, I can relate to some of what is happening to you. I won't go back four years when this all began and my inability to do the 3 antibiotics. I lost 15 pounds so had to stop--BMI now 18. I'm 77 years old and just can't seem to gain my weight back. Currently I'm feeling much better and am able to exercise. I neb twice a day with 3% Sod Chlo. My current MAC doc won't consider giving me the 7%--I've asked him for it twice. He says the science doesn't support it as making a difference. Maybe his ego is telling him I'm trying to "drive the train." I've asked my pulmonary doc and my GI doc for referral to a nutritionist and they said OK but never do. Best to you. Faye

Thank you for your reply. I am 78 and have not lost any weight but I have a "natural" BMI of 15 (at one time I was a competitive runner) and I have been advised to go to a nutritionist to help me put on weight to fight the MAC. My primary care doctor submitted a referral last Friday and I haven't heard back from a nutritionist at this point. But these things take time unfortunately.

Have you considered changing doctors? It's not fun to do so, but it seems to me you are struggling and deserve better treatment. I wish you the best also as we take similar but, like others, different individual paths. pmmar

@pmmar1 - The pulmonary doctor I'm using is actually the third one since my diagnosis. The first one I used did not seem to be very competent or knowledgeable about MAC. He loaded me up with the strong antibiotic and insisted I take all of them together and on an empty stomach. It was awful. He finally said, "I can't help you." He never offered to do a referral or even give me any literature, etc. to move forward. The next one I contacted because of help through this forum--he was great but it was a 3 1/2 hr. drive for my appointments. I asked him if he knew someone closer who he would be comfortable taking care of me. He instantly recommended two docs an hour away. That's who I've been seeing since. I'm not going to make another move at this point because I'm doing well. If things change, I'll probably reach out again. Thanks.