Started treatment for both M abcessuss & MAC

Hi Kelly. It sounds like you’ve been through a lot recently. I am taking Clofazimine (along with two other NTM medications) and the only side effect I have noticed with Clofazimine is slightly more tanned skin than normal.

I’m so sorry you are going through this. It truly is a horrific diagnosis.
I was on Clofazimine about 2 years. I have taken various antibiotics the last 4 years. IV’s inhaled and oral. I was diagnosed with cavitary MAC and Abcessus in 2022.

@reneemc You said you "had" been on Clofazimine for 2 years, are you no longer taking it? Has your sputum culture converted to negative?

Praying your doctors can zero in on the specific cause find an antibiotic to target that cause. I am back in the hospital now after staying out for only a month and a half. I'm colonized with pseudomonis and my mycobacterium abseccus is back. Very sharp pain lower left lobe whenever I cough. This is not to minimize at all what you are going through. It is a continuous struggle for all of us. Keep looking up! I'm on a first name basis with some of hospital staff and joke that I'll be getting a room with a plaque with name on it I'm here so often. Again it's very to stay positive but I look around and see people who are much younger going through much worse conditions than I have. Pray for peace and God's comfort.

I completely understand your anxiety about the diagnosis and long treatment of antibiotics. It took me months to accept my Mycobacterium Abscessus diagnosis. Hope you are taking a probiotic daily. And if you are nauseous, you might want to ask for a Zofran script to help, I cut mine in half before I take my Nuzyra pills. If you are taking Linezolid please be careful if taking it more than a couple months, after my 3 months I was diagnosed with neuropathy in both feet/toes.
My Infectious Disease Dr submitted my paperwork for the Clofazimine clinical trial and hasn’t received the drug yet.
Last week I asked my ID Dr for a break for a month to enjoy several activities/events the rest of the summer.
I started with IV’s in August 2025 (7 day inpatient) then middle of October transitioned to oral meds (Nuzyra & Linezolid) and inhaled Arikayce. Also I’ve had elevated liver enzymes with some improvement on my recent bloodwork. My next CT is in August.
Sending you positive thoughts and hoping you don’t have side effects of the meds. I have a good line of communication with my ID Dr. I message him on mychart and he is very responsive.
Take a step at a time. 😊

@mjb24 Mary , I had 11 consecutive negative sputum results. Probably false negatives.
I changed Drs and now the Norvartis program status has changed, they are being approved for availability in local pharmacies . Don’t know how soon that will happen.

Linezolid...satanic...neuropathy!!!! I was even telling my PREVIOUS ID doc something was going on with my feet and it went right over her head. She should have not been allowed to prescribe high powered antibiotics without being aware of their side effects...especially when the patient is complaing. Her (excuse me) ignorance has left me with an additional life long battle I shouldn't be facing!!!

My reply was to janetann and it appears here? Something wrong with this app?

@reneemc I have read several of your posts and with this last I had hoped you finally had success with the treatment. I am curious why you think the negative cultures are inaccurate. Do you still have symptoms? Our situations are somewhat similar as I also have cavities that do not want to close and I have been on the antibiotics and Arikayce for 2 years but continue to have positive sputum samples. I added Clofazimine Oct 2025. It is a long haul and can feel discouraging at times. I wish you the best and hope your new doctor will be able to offer support and all available options. God Bless

Such useful information about how these antibiotics affect us. Zofran is a must as no other anti nausea works, well that was my experience. I did not have much knowledge when I started daily antibiotics back in 2022. I kept going with the treatment and had negative sputum sample results for a year but then NTM returned. I feel that it is always lurking. There are good days and bad days. Sometimes others do not understand how awful you might be feeling. We have to keep going but there are days when you feel rubbish. So hard to plan anything. Not sure if I could go on treatment again for my NTM. My body is not the same and the weight loss is awful. Anyway onwards and upwards. Knowledge is power and everyone's experience is different. Good luck to everyone as my friends say God is good - not so sure sometimes but live in hope. Tests your faith.