Mayo Clinic Connect
Greetings. I'm new to the group and about to begin treatment for MAC. I'd appreciate hearing from anyone who has experienced the three drug treatment and especially hearing best ways to tolerate the side effects.
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Welcome to Connect, @onana
You'll find an amazing group of supportive and well informed people here. I recommend reading through some of the past discussions and joining in with your questions. Here are a few to start with:
> (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/ (main thread over 6000 messages, incredible information)
> Long-term Antibiotics for Bronchiectasis & MAC https://connect.mayoclinic.org/discussion/bronchiectasis-mac-antibiotics/
> MAC antibiotics and side effects https://connect.mayoclinic.org/discussion/mac-antibiotics-and-side-effects/
Onana, when were you diagnosed?
@onana Welcome, I wish you didn't have to be here but we all are here to support one another. Tell us more about yourself and how you got here. I have been on treatment with what we call "the Big 3" for just about 9 months now. Azithromycin, Ethambucol and Rifampin.. I initially was on Rifabutin but it gave me severe muscle and joint pain so was switched early on to Rifampin. I am taking a Probiotic Jarrow Formula 25Billion once a day and Vitamin D 2000iu. I have been taking them on an empty stomach without nausea. Rifampin has to be on an empty stomach. The others can be with food. I think the main side effect I notice is tiredness and sometimes water tastes funny. I take it really early Monday morning, Mid Morning Wed and late afternoon on Friday to try to not have such a huge gap between Friday and Monday. I fall asleep really fast when I sit down. Otherwise, I have done OK so far. Some people have more and less side effects.
@onana I also wanted to add, I was diagnosed in June of 2015 after a pneumonia episode and was not started on "the Big 3" until November 2017. This was done due to changes in my CT, otherwise I was not having too many symptoms other than what felt like mucus in my throat, not really a cough just that sensation.
Hi Jo Ann, and thank you so much for sharing your information, especially how you handle the meds. Your regimen is exactly what's been prescribed for me. (My name is Olivia. I live in Redondo Beach, not far from LA International Airport.) I plan to begin the meds when we return from a trip to Minneapolis on September 7th. I want to find out as much as possible about the meds and people's experience in order to prepare mentally and physically to begin the treatment. I understand that people respond differently, but it helps my spirit to hear from people like you who have tolerated the meds pretty well. Maybe I will too.
I was diagnosed with bronchiectasis in 1997 during a case of pneumonia, and diagnosed with MAC around 2009. Over that time period, and since, my physical condition remained pretty much unchanged with little interference in my life until April 2017 when I was hit with a case of pneumonia that laid me flat for about 6 weeks though I didn't require hospitalization. After that bout, my doctors monitored pretty closely and in January 2018 lung cavities showed up for the first time on x-rays and CT scan. With that development my pulmonologist started encouraging me to see an ID doc to discuss treatment. A second scan taken a few weeks ago showed that more cavities have formed, and the decision was made: try the treatment. My ID doc says I'm a "young 75" with no other health complications, and so he thinks it's worth it for me to try the meds.
Since last April I've been inhaling hypertonic saline solution through a nebulizer twice a day. That has really helped keep my lungs pretty clear and keep the cough down. I sleep well at night uninterrupted by coughing. I don't have as much energy as I used to, but I continue to walk for exercise (4 miles in 1.25 hours) once a week, and do some cardio during the week. My voice has become raspy from my almost constant congestion, and I can't go up stairs and talk at the same time. But I still function pretty normally, just less than I was used to.
So, that's my story. I have grandchildren who are scattered across the country (no one in CA), and my husband and I travel a lot in order to maintain a close relationship with them. If at all possible I'd like to continue to be able to spend time with them as they grow up.
I will definitely be taking a potent probiotic and a strong dose of vitamin D (as you have). What do you think of CBD oil to keep nausea down and appetite up? I'm a petite woman and pretty fearful about weight loss as a result of the treatment.
@onona, Hi there. Welcome to our Connect community. Like Jo Ann said, we are sorry that you have been diagnosed with mac, but are glad that you are here with us. There are various ways to scout around this site for info. Some folks are more techno-savvy than others. Please let me know if you need help navigating the site. One tip I have is that if you like a particular member's post; you can click on their @name highlighted in blue and it will bring up all of their posts. I am usually more talkative, but I have just returned home from a two week stint out of town and I am tired. There is a lot of info contained in the past threads and great members onboard to help with answering questions you may have. I look forward to getting to know you better.
Liked by tdrell
@onana I hope you do well. There is also inhaled Amikacin now too for this. So you may be a candidate for that also. I pray each day that new research will be done for a better treatment for all of us.
Thanks to everyone for the information and the support. I'll keep checking in and will read past conversations. I want to lend my support to you and to everyone else dealing with this "orphan" disease that could certainly use more research. It helps to know we are not alone with the ailments and the challenges.
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@onano, Together we are stronger! Knowing that we are not alone makes this disease a lot less scarier.
@onana Hi Jo Ann! I'm beginning my treatment today with the same 3 drugs you said you used when you responded to me on August 20, 2018. Thank you so much for that response. I am taking your advice about how to time the drugs. I'll let you know how it goes. I have to admit that reading about the nasty side effects from some folks on the forum has me a little scared, but your post encourages me to go ahead and give it my best shot. Thanks again. Olivia in California
@onana I know. We have to remember to make sure we don't make people too scared to try the only currently recommended treatment. I was really scared and at the was started on rifabutin first which gave me side effects of muscle pain and flu like syndrome. They changed me to rifampin and that when better. It has been tolerable so far. Not every one gets all the side effects.
Terri, I have just returned a few days ago from seeing my Pulmonary/Critical Care doctor. Two years ago I was diagnosed with MAC as we have discussed in the past. Suddenly after getting so sick on one on the antibiotics, treatment stopped yet since February of this year, I am sure, the MAC is having some effect on me. Fever and chills, nausea, headache, so little sleep and the fatigue overwhelming. I lost 40 lbs much too rapidly. Ironically, I go from shaking so badly from chills to heat that feels like 110. What we started to do was to take morning and afternoon temps. I go from 96.4 to 99.8. The normal is 97.6 so when I had what was severe sarcoidosis 30 years ago, I was only at 102-103. I bring up sarcoid only because despite all the symptoms of the MAC, I was told I was looking at sarcoid. The temp readings just started and I am sure the fevers have been higher. I am doubled over with pain at times and really weak. When I talked with Pulmonary Doctor, I told him that there has been no day that I haven't felt sick since February. After months I was told that symptoms could be related to my esophagus or diverticulitis. I was so sick at times that I never got on computer. I find it so hard to read that I was off computer but hearing the doctor say we stopped any treatment for MAC because I reacted to meds. I tried to get in pool twice to walk in Spring but basically collapsed after the gross fatigue that continues to this day. I was told yesterday by a physical therapist that works specifically with people with colon problems. She had never heard of MAC but feels I need to contact Mayo about MAC. Have you ever heard of anyone being treated for MAC after diagnosis and then just stopped?
@macjane Gosh Jane, that is aweful that you have felt bad every day since February. If you can get into Mayo clinic to be seen; I definitely would because you are dealing with two diseases that can be difficult to treat properly. From what I read yesterday from a Mayo Moderator, the Mayo in Rochester is the one you would want to go to because of your Sarcoidosis issue. They have good specialists there for that. My cousin has sarcoids and she said the fatigue is just unrelenting. Do you know if your sarcoids is actively back? Are there new tumors or any at all? Sending you a great big cyber hug Jane.
@macjane I also wanted to mention that the swing in body temperature is common with both mac and/or pseudomonas. I had a pseudomonas infection in the spring of 2016. With that, I was hot & cold throughout the nights and lost 27 lbs.
Hi there. I've been on the same mess of medicines that you are. How and what time of day do you take and/or space your doses out? I'm looking for suggestions to maybe change mine to. Thanks in advance.
@suzyqueue I take my meds all together on an empty stomach. I find I do not get too much nausea with them. Since they are 3 days a week, I try to space it out so there is not such a big gap between the 3rd dose for the week and the 1st dose for the next week. I take my them on Monday morning at like midnight or shortly after. Then on Wed I take about 11 am then on Friday I take in the late afternoon. Of course I have to make sure my stomach is empty so I adjust meals or snacks to make sure I haven't eaten within 4 hours of any of the doses. It has been working out OK so far.
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