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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
i have been on the triple ABT therapy for 14 months now for MAC/bronchiectasis. In the last a couple of months I developed a rash and the itchiness is driving me crazy. I went to 2 dermatologists, an allergist/immunologist and to my pulmonologist. I had 2 biopsies, and did a lot of blood work but they could not find a cause of the rash. I tried Anti Itch Cream, a cream with steroids in it, prednisone, etc and it still persists. The dermatologist thought it might be medication-related as did the allergist. My allergist took the lead and told me to eliminate one of the antibiotics (Rifamkin) as 66% of people have the side effect of a rash. Then if the rash does NOT go away, he will eliminate the Ethambutol to see if that is the cause. I am hesitant to do so. I had him call my pulmonologist to discuss but he is on vacation. The allergist said to me that I have been on the treatment for 14 months. Who really knows if 14 months is not as effective as 18 months. They have not done more recent research to know that. So.. I am a little conflicted. I did not take the Rifamkin last night, as I can't continue on like this either. I live in New York and believe I have an excellent medical team on Long Island. Any suggestions?
Replies to "i have been on the triple ABT therapy for 14 months now for MAC/bronchiectasis. In the..."
Yepper...and it's up to all of us to keep this disease on decision-makers' radar...from docs on news shows to the FDA. If we do nothing to promote the need for effective, inhaled drugs, our complaints will be meaningless.
Amen to that!
Thanks so much. Enjoy the holidays!
Absolutely!
I have a question for all of you. Are you sensitive to scents like cigarette smoke, cleaning stuff etc.. what happened when you are exposed?
Nick52....currently fortunately am not exposed to cigarette smoke....when I was.....I would get a headache and sore throat and the next day would have a cold. Tdrell
@nick52 I'm definitely sensitive to some scents. Cigarette smoke is one of them. Perfume is worse, especially the musky type. I feel dizzy and my heart would pound very hard. Sometimes I would have trouble breathing. Cleaning solutions don't seem to bother me much, though.
Some scents give me a headache (especially perfume). Sometimes I may not smell something but I start to cough. Only way to stop it even when I may have left the area is to take a lozenge.
When I use Hand Sanitizer it makes me cough
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i had the rash when i took the pills, they are pretty toxic Igot a lot of other side effects also, and not all when away when I stopped the pills. It is very difficult to keep weight on even thought I stopped pills a year ago. Also eyesight pretty bad now and heart palpatations. But I can feel my lungs getting worse now. It's a toss up, keep the disease down ( pills not a cure) or suffer the side effects. We need something non toxic to inhale to get rid of disease, They are slowly working on it. Take them as long as you can to buy some time. Then get off when side effects too much and start going after pharma to start clinical trials. I always tell them I am on a large forum with thousands of members and they woud make tons of $$$