Have to start the big three

I'd stop it if it doesn't get better. I could feel the drug leaving my body and just couldn't tolerate it....

I pushed fluids and am feeling a little better this afternoon and still waiting to hear from my Pulmonologist

One week of treatment and I was doing OK until this last night. My ears were buzzing, I started aching, couldn't sleep, had palpitations. I feel better this afternoon but still aching. I have been stable GI wise so far though. I was afraid to take anything for the aching to protect my poor liver from more medications.

Since I last posted, I have been hospitalized at Mayo in Jacksonville for five days to get the Crohn’s under control. I am now released and am to take the three drugs every day for 30 days. After that I am going to take them theee times a week for 17 months. The plan is that I will be able to begin Remicade for the Crohn’s in 30 days. When you start the three drugs, how do you do it? Take them all at once? What time of day? Right now I don’t know how to start them.

@pinktower , My gosh, it sounds like you have really been through it! I hope you are feeling better from your Crohn's episode. I know that was no fun. About starting on your meds; I have heard that some doctors have recommended that you introduce each antibiotic a week apart. That way, if you have a bad reaction to one, it will be easier to pinpoint which one it is. Members have written that Rifampin was hard on their stomachs, it worked out best for some if they took it on an empty stomach. It has been known to cramp the stomach or cause nausea. Everybody is different, you may not have any trouble at all with it. Let us know how you do on the BIG 3.

@jkiemen , Jo Ann, you have probably already read that the meds can be rough when you first start taking them, but get easier after the second week. Do let your doctor know about the ringing in your ears. Do you know which of the three is causing it?

I went back Two days ago for a follow up with my doctor. I now recall something I forgot to ask. When the infectious disease doctor visited me in the hospital, he said something about my eyes needing to be checked. I don’t have an eye doctor appointment. Do you think I should call about this? Or is the eye doctor appointment later on in the treatment?

Hi pink tower, if you are taking ethambutol, you should get eyes ckecked every 4 to 6 months. I had to come off this med because my vision was changing. Everything I looked at was really bright, even if it was 12 midnight. Once I came off this med, my vision hot normal again....

I have been taking the Big 3 for just over a week. The end of the first week I started to get very severe muscle aching the day after the medications. He had me retry just to make sure and it happened again. I think now I have to start over with one drug at a time but I think they are thinking it is Rifabutin that apparently can cause flulike symptoms. Has anyone had to slowly start back up on it and be able to tolerate it over time? I am already discouraged. I want my treatment to work and I don't want my Doctors thinking I am a complainer. Does anyone see MD at Mayo in Rochester. I am going to try for an apt there but I know it will be out or Network for insurance.

I found this about another Nitric Oxide study for MAC to start in 2018. https://cysticfibrosisnewstoday.com/2017/04/17/cf-therapy-novoclem-nitric-oxide-releasing-biopolymer-attack-pathogens/