@pamelasc1...in addition to the question I just wrote back to you, I was curious...are you losing weight because you have lost your appetite with taking the 3 medications? Are you trying to add calories?...just curious what to expect. Thank you!!

@beatitnow, Hi Amy, TRUST ME! The absolute WORST thing you can do is begin to be stressed about this process .. just go with the flow .. "trust the process" .. put your energy into what you can control .. and let go of what you CANNOT control! You can control gathering the best information possible from all of us .. BUT knowing each of us have different bodies .. different body chemistries .. ways our bodies will react. YOU will just have to go with the flow .. see how YOUR body reacts .. TRUST your body .. ADJUST to how your body is reacting .. TRUST your body .. WORK with your body. Know that your body is your friend .. know that if you take care of your body .. your body can take care of you in the future! So for now .. do NOT try to control the outcome .. the outcome will take care of itself! Trust the process .. trust yourself .. trust us .. we have been through it and have come out on the out side .. you will also!

**Below is what worked for me .. but keep in mind .. Basically everyone experiments with what med schedule works best for them:
1. PROBIOTIC: take probiotic half hour before breakfast on an empty stomach (when on meds I also took a 2nd probiotic in the evening on an empty stomach)
2. RIFAMPIN: Take this medicine on an empty stomach .. OR either 1 hour before or 2 hours after food NOTE: take 4 hours after vitamins: as minerals and most other supplements weaken effect of meds! (Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Be aware it can cause: Reddish discoloration of Stool or Urine etc.) FOR ME Rifampin caused sleep disturbance so I tried to take it FIRST THING in the morning!
3. ETHAMBUTOL AND AZITHROMYCIN: BEST with an empty stomach! .. BUT either 1 hour before, or two hours after meals! (taking BOTH at one time gives “greater punch!” (NOTE: take 4 hours after vitamins: as minerals and most other supplements weaken effect of meds!) * take with a LIGHT snack at most

Hope the above helps you .. this worked for me. Hugs! Katherine

Before i started i had blood work and a very thorough eye exam. I needed new glasses so i purchased and waited for them to come in so i would be aware of any visual changes. I started on Fri night. So my schedule was never comfortable in my head . Fri, sun, tue, just doesn't roll off the tongue. Make it as easy as possible for you to remember. Now Im on daily and take them all ethembutol, zithromisin, and rifampin at 7pm to avoid nausea. I have alot of other meds so i have them all competing for time slots. Get 2 seven day containers at any store by the parmacy area and keep only your antibiotics in them. They will help you to know when to reorder because you don't want to run out. The pharmacy might have to order them so call ahead to make sure they have time to do so. Let the pharmasist know everything you take , vitamins and supplements, so they can watch for any drug interactions. Also get your hearing checked before you start your meds for a baseline. My doctor didn't order this and I have been complaining at every visit for 3 months very loud ringing and now he is forced to do the right thing and sending me to a ear, nose, and throat specialist that is supposed to be familiar with ottotoxic drugs. Give a sputum afb, culture and sensitivity, blood tests for liver and kidney function, eyes and ears monthly. Also, get calendars one for your purse and a bigger one for the fridge for 2 years if possible it helps to keep track of all your appointments and test. I keep a notebook for any side effects or questions i need to ask the doctor. I hope this helps to make things easier for you.
Becky

@chinasmom...Thank you. Yes, I have done all of the above, but my doctor did not order a hearing test. I will look into this. Do you know which drug causes this?

Amy, I had check to see which antibiotics were affecting hearing azithromycin, clarithramycin, and other aminoglycosides. Everyones body is different so we have different side effects and sometimes we get lucky and have no side effects.
Here's hopeing you have none!
Have a great day!
Becky

@beatitnow, Amy, and @chinasmom, Becky, thank you for jumping in .. really good advice! In terms of the testing needed .. from my File Cabinet

TESTING-baseline and periodic
1. Ethambutol – color vision and visual acuity: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
2. Azithromycin – hearing and balance: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
3. Rifampin - CBD (blood counts), liver and kidney function tests: GET BASELINE PRIOR TO STARTING .. THEN MONTHLY

OR TESTING:
BASELINE: HEARING AND VISION (Vision: Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)

MONTHLY: BLOOD COUNTS, LIVER AND KIDNEY FUNCTION TESTS, SPUTUM CULTURES

QUARTERLY: HEARING and VISION
NOTE: Ethambutol – color vision and visual acuity – monthly ( Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)

**** Lab tests:
CBC- Complete Blood Count (CBC)
ALT- Alanine Aminotransferase (ALT) LIVER
alk phosphatase- Alkaline Phosphatase - LIVER
serum creatinine-. Creatinine and Creatinine Clearance-SERUM CREATININE - KIDNEY

TESTING RECOMMENDED FOR VITAMIN LEVELS 1. Ask for your VD-3 level to be checked .. they can get too low. Speak to your Doctor first .. but I took: NATURE MADE brand 5,000 IU of Vitamin D-3 (NOT VD) *From our member @tdrell Terri, my Primary Dr at NJH doubled the VD I take to 4000 units a day... my lab test showed I was at 50 and she said she likes to see it at 100.
2. Ask for your B-12 level to be checked .. they can get too low
3. Personally I always purchase the brand Nature Made vitamins for it's quality .. ' Nature Made is the first brand to earn the USP Verified Mark on one of its products, an independent certification for quality and purity.'

Good to print out the above and show to your Pulmonologist if necessary. You are your own best advocate! Hugs! Katherine

@katemn....this is great! I love your "File Cabinet" information! 🙂 Thank you and everyone else for their support right now and to come! 🙂 Amy

Hello Beatitnow - I have been taking all 3 meds at the same time, 2 hours after I eat dinner... this works for me, but I know staggering the meds can help with certain issues people have... I just found that I had no serious side affects when taking the meds around 10 PM 3 nights a week (Mon, Wed, Friday) I was lucky I guess. I have lost a lot of weight over the last 14 months - early on, I drank Ensure each day just to be sure I was getting some protein. I usually weigh 128 - I am down to 116 and have been steady with that for awhile. I just eat when I feel like it, but overall, I have very little appetite and have to force myself to eat. Hope this helps, Pamela

<br><br><br><br><br>I had the same weight loss issue. I went from 143 lbs to 117 in 14 months. <br>I also had no appetite. I have been on a tobramycin/cipro  antibiotic <br>regimen for six months now. Am feeling better and am putting weight back on. I <br>am now at 124.5 lbs. I drink the Ensure products too. Still low on the energy <br>though.<br> <br><br>