Not Treating MAC

Posted by barbjh @barbjh, Mar 28, 2017

So I had my visit to the Mayo clinic last week with tests that included chest Xray and Pulmonary function test along with TRYING to get a sputum sample, that never works for me. At this time everything is stable and they have decided to not treat. My function tests have not changed much and the xray showed no major changes. This is good news but I still get nervous knowing that I have these nodules in my lungs and that I am a former smoker. I still have not got clarification on whether I have Bronchiectasis. I sent an email out today to get some more clarification. I did not get a chance to see Dr Aksamit - he is so hard to get into now - becoming popular, which disappointed me since I have seen him in the past. Hopefully his assistant that I saw will at least confer with him. My trust level with Dr Aksamit is so much higher, he truly takes the time to discuss everything and give you the answers, and compassionate to boot. Are any others on this site not being treated and how did they decide it?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Katherine, Alumni Mentor | @katemn | Apr 4, 2017

@barbjh Yes I do use the Mayo nasal spray and am HAPPY to .. I use it .. 2 puffs .. 2x per day! One member said it caused some nasal bleeding .. me too .. BUT the other night I forgot to use it before bedtime .. then didn't want to get out of bed to go to the refrigerator to do it. BAD decision! I coughed/snuffed/nasal issues until I could hardly get to sleep for a LONG TIME!! Really makes a difference for me .. so I don't mind a bit putting up with a bit of nasal bleeding .. plus our home is SO dry in the winter .. that I am sure also contributes! So personally if I was you .. I'd give it a try. From my File Cabinet:

MAYO NASAL SPRAY The nasal spray I get from Mayo is what is called a "compound prescription" meaning the pharmacist actually prepares it themselves. Personally I just get mine filled at the Mayo Subway Pharmacy, Rochester MN and they mail it right to my home without any issue .. that has been the simplest thing for me.

WHY? If you doctor prescribes it .. you have to ask a local pharmacy: "Are you a compound pharmacy? Do you know of one and what is their phone number?" Then you can have the prescription transferred to that compound pharmacy from where your doctor faxed the prescription.Problem .. when I tried to get my prescription refilled at a local pharmacy they declined .. said they did not have the "kit" which is essentially the bottle and nasal spray portion .. not the ingredients. So this may be the issue you run into.
The nasal spray must be kept refrigerated and is:
Mometasone 0.033%, Ipratropium 0.02%, Diphenhydramine 0.033% Kit
TRAVELING
If you are traveling .. most places you stay will have a mini frig .. you could take a traveling wallet .. this was recommended for my husband's insulin .. you could "pick" out the threads between so it is ONE solid pocket.
https://smile.amazon.com/Cooling-Wallets-Insulin-Between-Refrigeration/dp/B000C15C8M/ref=pd_sbs_121_3?_encoding=UTF8&pd_rd_i=B000C15C8M&pd_rd_r=MQVZVDEG6WWKTH4BXY8F&pd_rd_w=3hyf3&pd_rd_wg=7fDea&psc=1&refRID=MQVZVDEG6WWKTH4BXY8F

Hope the above helps! Hugs! Katherine

Flib | @flib | Apr 20, 2017

I decided the side effects of the antibiotics were too severe, the duration for taking them too long and the recurrence rate, two years, too short. I was diagnosed seven years ago. I am now 80 years old. I do not regret my decision. I have had fairly good quality of life, able to travel etc. The mac x-rays and scans have been stable for the past few years. I also have bronchiectasis which is not treatable. I recently got a mild pneumonia so not feeling so great now but a bit better every day. I know some people tolerate the drugs well but others are truly miserable on them.

boomerexpert | @boomerexpert | Apr 21, 2017

If you're asymptomatic glad you're not taking the meds. No need, actually!

swrtwdml | @swrtwdml | Apr 21, 2017

In reply to @boomerexpert "If you're asymptomatic glad you're not taking the meds. No need, actually!" + (show)

But wouldn't it b better to treat the infection while one still feels good?

boomerexpert | @boomerexpert | Apr 21, 2017

How one feels is not the criteria...treatment based on growth of infection determined by CAT/PET scan...as with any other infection, treat only when clinically necessary.

Terri Martin, Volunteer Mentor | @windwalker | Apr 23, 2017

In reply to @flib "I decided the side effects of the antibiotics were too severe, the duration for taking them..." + (show)

I too was diagnosed back in 2005. I opted to skip the three drug treatment also for the same reasons. I did a stint of antibiotics for like 10 days and that beat the infection down for awhile. It showed up again in 2013. Mayo drs put me on alternating month antibiotics for three yrs. One month it was cipromycin, the next month doxycycline. I am now on alternating months of inhaled tobramycin for 28 days, then 10 days a month of clarithramycin. So far, this treatment plan has been the best. Have been breathing clear and zero cough for the lasy 9 months. Terri M.