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MAC Medication Side Effects
I am on the following and seem to be tolerating it well.
Ethambutol 400 mg. 4X Morning
Rifampin 300 mg. 2X Morning
Clarithromycin 500 mg. 1X Morning 1X Evening
Except: Mild stomach issue. Not really nausea or stomach ache. Just an underlying feeling of something different. More of somewhat of an awareness of my stomach other being hungry or full. Can't really put my finger on it. Justca different feeling. It does seem to be curbing my appetite and I have lost some weight. I usually put on 10 ponds during the winter. Just wondering if anyone experiencing anything like this.
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@macsucks
That is a rather high dose of ethambutol. Ethambutol can cause vision loss and you need to see an ophthalmologist at least every 1-3 months. I researched this after becoming legally blind due to ethambutol. Vision loss is rare, but can be permanent and devastating.If you give me your email, I’ll send you a copy of my research. Mine is chryl_hys@yahoo.com
@macsucks Lots of questions to answer here.
Airway clearance is one of the keystones to managing bronchiectasis and the associated infections. Our damaged lungs do not expel mucus normally, so special strategies are required to coax it out, because it provides a breeding ground and hiding place for bacteria.
The process involves opening the airways with albuterol or a similar medication, either via inhaler or nebulizer. Then saline solution may be used to thin the mucus, and finally controlled breathing and coughing are used to expel the mucus. This is done one to three times each day.
Here is an excellent description of airway clearance and why it is so important, from one of the leading experts in the country:
Frequency and dosage of antibiotics is based on the exact bacteria in your lungs, what drugs it is sensitive to, and the severity of infection. Daily dosage in high quantities is usually reserved for severe infections.
The severity of a MAC infection is determined by all of these:
The quantity and specific type of bacteria in your sputum cultures
Two or more consecutive cultures must show bacteria
Symptoms (cough, fatigue, weight loss, fever...)
Condition of your lungs on a CT scan (nodules, ground glass opacities, cavities)
On the CT scan, "ground glass opacities" are gray areas that MAY indicate a current infection. Nodules are areas thought to contain or encapsulate infectious material. Cavities are areas where infection has severely damaged the tissue - essentially holes where no air exchange can take place. Bronchiectasis appears as little white "O's" on the scan - areas where the airways are no longer opening and closing properly. The doctor should be able to show you these areas on the scan.
When you say you are seeing a "MAC specialist" do you mean an Infectious Disease doctor? Like many pulmonologists, ID doctors may or may not have expertise in treating MAC infections. Both bronchiectasis and MAC are rare diseases, and many doctors see only a few cases a year, so they may not be aware of the latest protocols for management and treatment.
The fact that nobody has taught you about airway clearance leads me to believe that your doctors may be in that category.
Can you tell us what issues led you to see the doctors?
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1 Reaction@sma2 Wow. I have an appt. with the MAC doc in a few weeks and I will ask him about this. So sorry to hear of your vision loss. I am really torn about treating MAC versus just letting it do its thing.
Do you have cavitary disease? In hindsight I should have refused treatments and just continued with airway clearance, but I believe my case is very rare. If you don’t want to share your email, I’ll post my research paper as soon as I can figure it out. It seems many doctors lack info about ethambutol.
About the Ethambutol you are taking, 400 mg x 4 = 1600 mg -- At my weight of 150 pounds, I was taking 400 mg x 3 = 1200 mg three times a week. This medication could cause some rare, although serious, side effects (google). You may therefore want to check the dose with your doctor.
@sueinmn Well, back in June, I coughed up blood. Have been a smoker and have a pulmonary group I see. While in the hospital, They shoved something down my throat to get specimens and to clear mucus plugs. Then testing then MAC diagnosis. So, they sent me to a ID specialist who is very well respected in Chicago area. Also had a PET scan and it showed possibility of lung cancer. Biopsy said no. They also have me doing nebulizer treatments twice a day with albutorol and Saline. Do Trelegy at night before bed.
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2 Reactions@macsucks
I'm attching some key information form the paper I'm writing to describe my ethambutol story. I'm not trying to discourage the use of ethambutol however vision needs to e closely monitored. Most people don't have a problem but there is no test to determine who is susceptible to ethambutol toxicity. PDF attached you can share with your doctor.
DRAFT Key Ethambutol Information (DRAFT-Key-Ethambutol-Information.pdf)
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1 Reaction@sma2 Thanks
@happyhealthyme I weigh 59kg and was started in 1600mg that’s 4x 400 three days a week. I got neuropathy in my feet 5 hours after the first dose and it just got worse. Pains everywhere until they stopped it 18 days later.
@snoei
I don’t care for the taste either! I put a little honey in a cup with some hot water, add the mullein bag and then add a k-cup of lemon ginger tea. Tastes fine with that.