Connect
Stopping meds when still positive
I’m contemplating,with doctor’s concurrence, to stop the meds for my NTM Mac for six months and assess CT Scan at that point. I’ve been on the drugs for 2 1/2 years and I’m still positive. I have no symptoms. Wondering if going off the drugs and then perhaps needing to come back on them after six months, increases the likelihood of the bacteria developing resistance either during that six month period Or in response to restarting the drugs?
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
That sounds like a great question for your infectious disease doc, maybe thru the patient portal. It seems like an important one and I hope doc answers or others here have asked the question and share.
-
Like -
Helpful -
Hug
3 ReactionsI have had two episodes of two different subspecies of Abscessus with breaks inbetween. I was still sensitive to the same three antibiotics. They have not developed a resistance. I don’t know exactly what you are fighting in the NTM world; but some are still very resistant to being cured due to the biofilm that protects them from the antibiotics. Good luck with your antibiotic holiday.
-
Like -
Helpful -
Hug
2 ReactionsIt sounds like after 2.5 years your NTM sounds like it’s resistant anyway
I was in similar situation although I had to stop meds because of the damage they did to my body.
After 3 years of antibiotics it doesn’t seem to have got worse in fact one of the cavities had significantly reduced.
On the downside the damage caused by the antibiotics is still progressing
-
Like -
Helpful -
Hug
2 ReactionsWhat meds did what damage?
-
Like -
Helpful -
Hug
1 ReactionIt was first the ethambutol which started to affect my eyes sight.
That was switched to Ciprofloxacin which virtually paralysed my abdomen gave me diarrhoea and complete insomnia and many other things which were all blamed on the infection because I wasn’t having any tendon pain. Then later on things were changed to clofazimine Amakacin azithromicin Rifabutin. the Amakacin destroyed my hearing but the clofazimine further ruined my gut and skin.
I’d say out of them all and connecting with other people who had the same reactions it was he Ciprofloxacin that did the damage. If it wasn’t for the Ciprofloxacin things might have been a lot different
-
Like -
Helpful -
Hug
2 ReactionsThanks for the detailed reply. I was on cipro for 2 weeks in March and the doc never said a word about side effects. Just recently learned that it can cause tendinitis and rotator cuff injuries. Not a good idea to do high impact exercise. Read that Amikacin can cause hearing loss even after it is stopped. I am learning to question and research everything. Thank goodness for the internet and kind, helpful patients like you. So sorry for your suffering. Hope it is mitigated by the improvements in your condition. You are a brave soul.
I have hearing aids now with moderate hearing loss thanks to the amakacin
Felt like it was helping the Mac but it’s back with a vengeance now and drugs make me feel pretty crappy this round.
Which is odd because I was on higher doses last two times and it didn’t bother me at all.
May I ask why it was recommended to start the meds if you have no symptoms?