Connect
Discontinuing MAC antibiotics
For those who have been on the horrible 3 MAC drugs plus Amikacin/Arikayce and terminated usage, was it done cold turkey or did you get off them gradually in the way they were introduced?
Asking on behalf of my husband Bruce who is lobbying his ID/Pulmonologist to either suspend the drugs so he can get out from under the side effects for a bit, or end them completely.
On the up side he has had 7 negative cultures and is no longer producing sputum.
Thanks in advance for your responses.
Melissa
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
@melissa08 Hi Melissa, I went off cold turkey and it was fine, they are not an addictive drug thank goodness. Heather
-
Like -
Helpful -
Hug
2 ReactionsThanks Heather. That's helpful to know.
Keeping our fingers that he can get a break.
Melissa
-
Like -
Helpful -
Hug
1 ReactionCold turkey! I never had a negative culture, just got to the point where I could no longer tolerate the side effects and my lungs were looking "better".
I have stayed healthy for 20 months now with 7% saline nebs, mucus thinning meds and airway clearance.
Recovery from the side effects took another year, but I began feeling better within about 2 weeks. I don't know if I would ever take the big 3 again...
Sue
-
Like -
Helpful -
Hug
2 ReactionsOh Sue, sorry you had such a difficult time. Seems like my husband is on a similar track. He is in agony with SOB, and now the back pain, lost a ton of weight, and losing faith in the “cure”. I will pass your note along to him, my born in Minnesota guy. Thank you so much, once again.
Melissa
Don't get me wrong - my MAC was severe enough that I don't think I had a choice but to do the antibiotics. It's just that our bodies cannot always handle them.
But I also think 7% saline & airway clearance are really a relatively new "key" to keeping the MAC at bay. Maybe the experts will rethink their 12 months with no positive cultures protocol, and look more closely at what is going on in each person's lungs and body.
Sue
-
Like -
Helpful -
Hug
4 ReactionsTwo of my sisters were on the big three. One of them stopped cold turkey after 18 months due to vision loss. The other one quit at that very time, six months into it. No problem stop being cold turkey.
-
Like -
Helpful -
Hug
2 ReactionsAlso, I have MAC and my doctor wants me to go on the big three and I am very reluctant.
-
Like -
Helpful -
Hug
2 ReactionsI am giving the meds 6 months to show a negative. If no negative I will consider stopping. I am using the 3% and when I asked my ID MD for 7% and he said ask your Pulmonologist. I am sending him a message through Kaiser Portal tomorrow. The SOB, constant coughing, fatigue and back pain is limiting me in all I try to do...
Hi Lucie - What are you doing to keep the MAC at bay do you can avoid the Big 3 - like 7% saline nebs, airway clearance, etc.
Sue
Hi Helen - Are you willing to consider a CT scan to show whether the MAC is receding in your lungs? That is what influenced my decision to stop the antibiotics in favor of 7% saline and other efforts to stay healthy.
Sue