Badges (1)

About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (17)

May 9, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hello Katherine! I hope you got my email with my name. My daughter set me
up and thought we had to be careful with our name. Now I don’t know the
link to get on the Mayo news letter or whatever I was on and saw yours and
others post. Can you give that to me? I will be going to Mayo on the
15-16th. Hope I can see Dr A as I have some issues since I am not on any
meds right now.

Ellen

May 4, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Thanks Katherine, this is a lot of helpful information! I do have a
nebulizer, I took something a while back but I don’t do that any more per
doctors orders, but have the machine. It helps to understand it all.
Something I took in a nebulizer made me sick to my stomach so I got another
medication for it.
My understanding was there is a test trial where one goes to Mayo about
every month so the doctor can keep tabs on you more closely. And you had
to do it faithfully at home every day.
Two lung doctors told me about the leprosy drug, it is for real for
treating MAC. Will wait to see Dr. Akasmit and what he recommends! But at
least I will be knowlegable about Amikacin.

Ellen

May 4, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hello Katherine, yes I agree my e345l isn’t friendly!!! My name is Ellen.
What I need to find out more about is, does the amikacin inhaler have a
strong solution in it that one may feel nauseated?
I know my doctor will answer my questions. It affects every one in a
different way. One fears the unknown. Is it the sterilization part that
gets bothersome? It could for me, especially if you have to boil water
for extra cleanliness. I would like to hear your experience with it.

May 3, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi, just wanted to comment on your situation. I am sorry you got so sick!
I was very lucky and never got sick on taking 3 meds-every day practically
all day long to avoid getting sick. For one year I did the azithromycin,
rifampin and ethambutol, the concentration as yours. Didn’t stop it. Next
9 months I took clarithromycin, 2 tablets daily, ethambutol 2 tablets daily
and 2 rifabutin daily.
Never got sick. I separated them from morning, noon and evening and it
worked great. I took heavy doses. We’ll see what the next meds I will be
on do, but so far I am grateful. Hope it gets better for you! Never took
the pill for nausea that you take. Hang in there!

May 3, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi Katherine,
I believe it is the inhaled one. In my notes from Dr A. he mentioned
pending clinical response from what they are doing May 15th, there’s a
possible enrollment into the liposomal amikacin versus off label amikacin
with or without clofazimine which has rifampin which I was on a full year
and did no good and switched to rifabutin for 10 months which was stronger
and no results yet. Please tell me everything you can about this
amikacin. I believe I was told it was inhaled. I really appreciate the
links you sent me, I haven’t read it yet but plan on doing that today. I
don’t know how to find this type of information and you can find it! It
seems I am absent minded a lot anymore!

Have you heard of the Leprosy drug or shot? They considered that but that
too turns your skin very dark! And it isn’t approved by the FDA. They
said it was safe. I just don’t like the name of it, fear of looking like
a leper! They assured me that wouldn’t happen!

You mentioned the hearing problem and this morning my ears are so plugged
up! For 3 hours! They have never been plugged up before, don’t know why.
I have been off ethambutol and the other meds for 4 weeks now so I
shouldn’t experience any ear trouble. Yours was mostly loss of hearing?
Today I am getting a sonogram on my carotid artery that was operated on
about 7 years ago. Hope that isn’t plugged again. I won’t do that
operation again!

My skin is turning back to normal and I won’t have t hat nice suntan look!
Darn. I figured it is the rifabutin but they want to check to see if any
other damage has been done.

Thanks again for sharing

May 1, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi Katherine,

Glad to hear from you! I did want to mention, Dr Aksamit said I would be a
good candidate for that amikacin test trial. That’s why I am asking about
it. He ordered some test in May that will tell him about the color of my
skin, my weight loss, poor appetite, tiredness, which all the doctors are
concerned about as I deteriorated a lot. If there could be an underlying
problem! I am referring to my gp doctor, my dermatologist, and the lung
doctor down here who are keeping tabs on all this. The ritual of pills I
took didn’t stop the bacteria. I forgot about the hearing too, I do have a
hearing aid but forgot if I was supposed to be tested every so often like
the eyes. But temporary I am off ethambutol. My sister use to tell me get
off Crestor but I wanted doctors orders to stop taking it and doctor
Aksamit took me off. That’s a question for Dr Aksamit. However I won’t
see him in May until he has time to study the test I am taking.

Hugs to you too, I am 76, healthy all my life until 6 yrs ago! I am
grateful for that as for many other things. More later, really enjoy
visiting with you!

Apr 30, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Thank you Katherine for responding to my post. I was on rifampin and
ethambutol and azithromycin for 1 year, it didn’t stop the spread of the
mac besides having bronchitatsis. So then I met with Dr. Aksamit, he is
wonderful, knowledgeable and kind, the best! I was taken off azithromycin
and rifampin, which turned my urine yellow, and put on claritromycin and
rifabutin and ethambutol again. The rifabutin I feel turned my skin
bronze. I was on those meds since last June. I had to go to the
ophthalmologist every 3 months. Now I wonder about my eyes as I too can
not read the green overhead signs or the smaller ones. The eye doctor
would always ask me if my sight has changed, I did mention I couldn’t read
the street signs until I was right below them. I wasn’t taken off
ethambutol though. Just recently the concern over the bronze skin color,
the doctor took me off all 3 meds plus crestor. I was wondering if anyone
else out there took rifabutin and if their skin as well as urine turned
bronze. I am getting some more tests done to figure the yellowing all out.
I seen that you did the amikacin 2 ml inhaled 3 x a week plus. Did that
have clofazimine in it? I guess there is a possible enrollment into the
liposomal amikacin trial. How was that? Was it awful? Bad taste in your
mouth? Please tell me something about it as I think I might be going to be
doing something like that.

Since I was due for cataract surgery, that might be why I couldn’t see
that well. I have had it done, will see if the signs are any better when
I get my new glasses.

Do you have to have oxygen? I have difficulty with shortness of breath
after a brief walk, very brief. But my oxygen level is 98, that’s good.
I am not on oxygen, thank the lord. My only problem is being tired and
sleeping for 2 1/2 hours most every day. My appetite isn’t very good, but
I eat small portions, did you lose weight at all? I did. Am now taking
Ensure, Enlive with lots of good nutrients in it. So thankful you take the
time to answer people. You are a saint!

Apr 29, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

What 5 antibiotics were you taking Katherine? I saw that in a previous
post, am new to all this so I hope I am replying right. Has your skin ever
turn bronze from using rifabutin for 9 months? I was on 3 but at a stand
still now as it didn’t stop the MAC. Don’t know what is next. e345l