MAC drug side effects

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bloggymom

Member
I am starting my MAC treatment on Monday.

Those of you who have done MAC drugs... what were your side effects?? Were they easy to manage?? Lose your vision... diminished vision?? Hives, rash, red skin??
How about joint pain or muscle pain??? What drugs cause the side effects?? I have heard bad things about ethambutol.

I am optimistic but also want to be realistic.
 
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Printer

Active member
I did not have any hearing or vision problems, although I was tested for both, every two weeks. I had joint pain, muscle aches and a tiredness much like you would have with the flu. No skin problems at all.

Bill
 
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greatbay

New member
I took the meds for 7 1/2 months until I just couldn't go on. My reaction was joint pain, headaches, extreme fatigue and weight loss. I also had rusty orange colored urine, tears and sweat. Have a friend who was on the treatment for 18 months and only had some side effects in very beginning and then they all went away...she was lucky and with any luck maybe you could be too.
 
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MichaelL

New member
I have been on MAC treatment for about 20 months now, but they have had to change my drugs a few times due to side effects. My worst experience was with Tygecil. I was only on it for about three months. Initially, it caused nausea which made it difficult to eat. Over a longer period, it caused severe constipation and pancreatitis. I ended up in the hospital in quite a bit of pain. I also ended up losing 20 pounds, which I have mostly gained back now almost a year later. Although the drug seemed effective on my infection, it wasn't worth the side effects. I would never use this drug again.

The other drug I've had problems with is Amakacin. The IV form caused ringing in my ears and damage to my hearing. If you are on this drug, I would recommend you go for monthly hearing tests. The damage done to my hearing is in my upper registers and doesn't effect my day-to-day life. However, I've heard it can progress quickly from there.

I am now on inhaled Amakacin. Although it's not as effective, the side effects are much lower.

I started oral Clofazimine at the beginning of this year. My skin is now orange/tan looking. I often get asked where I've travelled to to get such a tan. However, the colouring rubs off on my clothing, sheets and towels (and doesn't wash out). I consider this minor compared to my other side effects.

I've been on IV Cefoxitin for the entire run. It doesn't seem to cause me problems.

I have also taken Cipro and Zithromax for years. As far as I know, these do not give me any problems.

During a prior round of treatment, I was on oral Linezolid. After about nine months, it cause numbness in my feet and lower legs. This took a long time to go away, but isn't really an issue anymore.

I think side effects vary considerably from person to person. However, it's good to know the side effects for the medications you are on and keep an eye out for them. I always ask the doctor about any symptoms that I think may be side effects. My clinic has a dedicated pharmacist who will look into side effects for combinations of medications.

Good luck with your treatment. I hope it's successful (and shorter than mine).
 
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