Ethambutol

@cpitts Were you having vision issues, or was this a routine visit? My docs made sure I knew exactly the symptoms to watch for, to stop ethambutol immediately if noticed, and I had my eyes screened every 3 months while on the meds (incl 6 Mos every day). I'm still fine over 6 years later. There are other docs who prescribe alternative meds, but an ID doc should determine whether your strain of MAC is sensitive to one of them.
PS, my ophthalmologist was the doc of choice to see MAC patients in out clinic system.
I would ask my doc to explain why they felt you were at extraordinary risk and should not use ethambutol- like seeing changes.

I have been on Ethambutol daily for 2 years and have regular visits to my eye doctor but so far I've had not issues. I am also on Clofazimine which has to go through a special program (SPIND) because as you said it is a leprosy drug and not yet FDA approved for MAC. It is shipped to my house, 3 mos supply at a time, directly from the Dept of Health and there is no charge for it. It's hard to make these decisions, I certainly understand the fear of adverse effects. I did not catch this disease until it caused multiple cavities and damage to my lungs so my perspective is to do all I can to try to rid myself of this awful bacteria or at least keep it knocked down to prevent further damage. Being referred to NJH is great from all I have read. You will have doctors that are very familiar with MAC and the meds. I wish you the best. Prayers for your continued strength and a healthier tomorrow.

My infectious disease doctor advised me to keep with regular eye checkups as the medication could effect the eyes. Fortunately it did not effect mine. My vision has gotten worse over the years and I've had cataract surgery, but no issues from the medications.

I’ve had MAC 3 times now over the course of 8 years. Was on the big 3 the first time and it subsided. The second time went on the big 3 plus amakacin. Lost some hearing but it went away for a bit again. 3rd time now. On the big 3. But getting no where. Added the clofazimine and now sputum still positive but taking a lot longer to grow so am hoping I’m almost done with round 3.

@sueinmn
Thank you. I am not having vision problems. I just missed one of the color blindness tests and got alittle scared. However, my ID and Pulmonologist still agree Ethambutol is the best so I will stick with it. Appreciate the advice and help!

@mjb24
Thank you Mary so much for the encouragement! I am going to stick with the Ethambutol unless I need the clofazamine. Do you have any adverse reactions from that drug? And yes..looking forward to going to Denver to see what they think. Appreciate the help and I am going to keep praying for you as well!!

Hello everyone! I am 85 I have BE/MAC my doctor is sending me to the Infectious Disease clinic at UC Davis last of June, I have absolutely no idea what to expect, could anyone that has seen such a doctor what to expect? I am very apprehensive about this appointment . I would really appreciate any input .

@cpitts I have not had any bad reactions from the ethambutol or the Clofazimine. A slight skin darkening (tan) from Clofazimine but not very noticeable. Has your doctor mentioned adding Arikayce? It hasn't worked for me so far but there are many others on this group who have had their sputum cultures convert to negative within just a few months on of starting it. Thanks for the prayers!!

@petry Seeing a MAC specialist is a very good thing! They will be able to explain things to you and offer treatment options appropriate to your circumstances. Hopefully someone in this group has had experience at the NTM clinic at UC Davis and can offer you their experience.

@mjb24
Thank you so much !