Skip Navigation

Discussions

Anyone on bedquilline?

In: Treatments & Medications
2 2507
D

Recently had to stop iv amikacin due to hearing loss. Still on rifampin and azythromycin. Waiting for bedaquilline which was approved by pharmaceutical co., Sirturo.

Any side effects, efficacy of drug?

Latest Activity: July 21, 2016
8
2 Replies

Replies

A

Hi Donna,

Bedaquiline is a quinolone drug, originally developed for use on multi-drug resistant TB. Like many other drugs used to treat NTM, there aren't a lot of data available on the efficacy, but like other drugs developed for its purpose, your doctor likely prescribed it because it has shown some effect on NTMs.

In clinical trials, the most common side effects were nausea, joint and chest pain, and headaches. Levofloxacin, another quinolone, causes magnesium depletion, which can cause joint pain and tendon rupture, so you should talk with your doctor about adding a magnesium supplement to help ease that possible side effect.

Another potential side effect is a heart arrhythmia called long QT syndrome - again, other quinolones can have this effect. So you should also speak with your doctor about a baseline cardiac test and after starting treatment.

Hope this helps!

Amy

Latest Activity: May 11, 2016
8

Comments

D

Thanks, Amy. My doctor has the drug in hand but wants me to go to Denver to consult with Dr. Daley and Dr. Mitchell first. Drug has very serious side effects as you said. I am hoping they can get me an appointment asap. Waiting to hear back.

Yes, on Thursday, my doctor gave me a baseline EKG.

Latest Activity: May 15, 2016
2
G

You have made a wise decision going to Denver. I see Dr. Daley & Dr. Gwen Huitt there. Dr. Mithell was my surgeon. I am finally off meds after 5 long years. Without them, I would still be on meds without any hope for improvement. Good luck!

Latest Activity: May 16, 2016
2
D

@Glenda What surgery did Dr. Mitchell perform? I have cavitary disease in my lower and middle right lobe. Very nervous. I have been on the meds for 4 years and nothing is working. I am hoping I can be a candidate for surgery to get this out of me. Looking forward to hearing from you.

Latest Activity: May 17, 2016
2
R

@Donna
Dr. Mitchell did my pneumonectomy. That man is a saint. I credit him and my ID doctor at Kaiser for saving my life. Good luck in Denver.

Latest Activity: July 20, 2016
2
D

@Roxanne Thanks so much for those encouraging words. I saw Dr. Mitchell on July 7th. He feels that he can remove the middle and lower right lobe with very little effect on my quality of life since I haven't been using them for awhile. I am trusting that he is right. They will schedule me in the fall for surgery. All we can do is pray! Much thanks again.
Donna

Latest Activity: July 21, 2016
2
R

@Donna That is awesome that you have the best--and most handsome--surgeon to do your surgery! You are in great hands. I would be happy to share my experience with the surgery as well as answer any questions you have from a patient's perspective.

Latest Activity: July 21, 2016
2
R

My doctor put me on mefloquine for awhile. That was somewhat experimental, as far as I know. Has anyone else been on this drug?

Latest Activity: July 21, 2016
2
K

This is why my pulmo was dragging his feet for giving me zpak as it does cause hearing loss. Well beings I already have the loss he decided to give it to me.

Latest Activity: May 11, 2016
7

It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. We make every effort to support our members, our medical professionals cannot and will not provide a diagnosis or suggest a specific medication; those decisions should be left to your personal medical team. While we encourage individuals to share their personal experiences with COPD, please consult a physician before making changes to your own COPD management plan.

Community posts are monitored by the 360social Community Manager, as well as staff respiratory therapists, educators, and other medical professionals.

An unhandled error has occurred. Reload 🗙

Rejoining the server...

Rejoin failed... trying again in seconds.

Failed to rejoin.
Please retry or reload the page.

The session has been paused by the server.

Failed to resume the session.
Please retry or reload the page.