Connect
Any good results from taking Amikacin?? and what were side effects?
I am new to this forum, but not new to bronchiectasis and MAC.I had my first sign of bronchiectasis in 2000, finally diagnosed in 2011 and.by then I also had a MAC infection. Took the triple cocktail for two years (2012-2014) until my vision started to be affected. I've been on and off various antibiotics the last few years but now since October I've been having more flares and last week CT scan shows disease progression. My ID Doc retired from private practice..and I've only had my PC and Pulmonologist..I'm about to get a referral to a new ID...no specialization in MAC..and I don't know what to expect. I will no longer take many of the drugs because of side effects that were pretty severe. So...big question....Who here has taken Amikacin??? and what kind of side effects did you have?? I am most likely going to Mayo in Jacksonville but I know my options are really limited. I just want some insight. Thanks.
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
Hi @beatitnow, I was on Amikacin Inhaled for a year. I have new nodules but apparently they can come and go. My recent Bronch sample came back clear of MAI. I think we are all learning incl the drs. Unfortunately nothing much is confirmed about MAI but we can help that with this site. I am not sure that there is a time that MAI re flares, everyone seems to be different, I know Quite a few at 2 years and I have been told there was a lady whos reflared at 15 years(very unusual). Hopefully we can all be successful at taking meds that do not do us much damage but keep the MAC at bay like @windwalker. There is alot in the pipeline, bring it on. If you take inhaled Amikacin let me know and I can help.
-
Like -
Helpful -
Hug
1 Reaction@heathert, you used Amikacin alone with no additional antibiotics? I can't take Rifampin so I'm interested in alternatives. Thanks! Betty
@allegres I took Amikacin with the big 3, however the big 3 diddnt seem to be doing anything for 2 years b4 that, and I am back on the big 3 alone noe so will be interesting. I believe in the Amikacin.
-
Like -
Helpful -
Hug
1 Reaction@heathert did you take the inhaled type or IV?? And minimal side effects??
@gaylewroc Yes I took the inhaled version, very minimal side effects, bit of a funny throat and loss of voice for a few days.
@heathert Thanks..that doesn't sound so bad. Way better than the 3!!!!
-
Like -
Helpful -
Hug
1 Reaction@gaylewroc Its a piece of cake, let me know when you start and I can give you some tips. The big three start off hard but get better, I have been on them around 4 years now, dont really know why.
@heather. Ugh, I was on the 3 drugs for a little over 2 years. Until I had pulsating blind spots and I would get lost when driving. I was a Realtor and I had to stop working. The Docs then put me on Cipro and I felt like I was dying. I stopped taking everything and started juicing and eating super clean, fruits vegetables nuts & seeds. My cultures were still positive but I built myself back up. I was doing pretty good until this past fall after a trip to the beach. Just not feeling well..and I've gone downhill ever since. I guess its time to get back on the drugs now but I dread it. I just hope if I have to take the Amikacin I can get the inhaled type..I know some people need a port put in for IV and I would hate that!! I'm seeing new Doc at Emory in Atlanta next month. I'm going to try to stay positive!! Thanks for the positive info!!
-
Like -
Helpful -
Hug
1 ReactionI'm very happy to hear about your experience with the Amikacin. I'm getting ready to start it tomorrow and am anxious but feel good about trying it.
-
Like -
Helpful -
Hug
3 Reactions@suzyqueue Wow!! Keep us posted!! Good luck!!!
-
Like -
Helpful -
Hug
1 Reaction