Cayston dosages and ringing in ears

[Georgiagirl]

Has anyone been on Cayston for an extended amount of time and are experiencing any ringing in their ears? I've been on Cayston for 2.5 years on a 28 day on and 28 day off schedule. I've also read of others that have a different dose and/or different length of time for dose. I would hope to have feedback from others to know what they have done and what does or does not work for them. The last Cayston dose I did was also with IVs, so it was thought that the IVs was the culprit. I am on day 26 of 28 and the ringing started today. It isn't as loud as it was when I was on IVs, however, I do not want to chance it STAYING! I am hoping to talk to my CF team about possibly doing 21 days, so I am not as junky when I start and perhaps the shortened time frame will help me to protect my ears! Appreciate hearing from you, thanks.

 

[triples15]

Hi Georgiagirl,

Sorry you are experiencing ringing in your ears. Ugh.

I've been cycling Cayston 28 days on and 28 days off for a few years now. I've also done several rounds of IV aztreonam. I do have occasional ringing in my ears but have never noticed a correlation with Cayston. I haven't heard of anyone having issues with this (doesn't mean they don't exist), and typically the drugs that cause problems with ears/hearing are the aminoglycosides, of which Cayston is not. Also, since the ringing didn't start until day 26 of your cycle, I'm going to guess it's unlikely that Cayston is your culprit.

That being said, you could definitely ask about changing up the cycle. I used to have a major rebound effect where after finishing my "on" cycle I would start to feeling really junky again a few days to a week later. My doctor had me start cycling it 2 weeks on and 2 weeks off. It seemed to help. Now I no longer get near the boost I used to get from Cayston, so I'm back to the 28 days on and 28 days off because I can hardly tell the difference in my "on" months.

Anyway, that's my 2 cents!

Good luck to you, and take care!

Autumn 34 w/CF

 

[Georgiagirl]

Thank you, Autumn for your reply. It helps to learn of others experience. Interesting about the 2 week cycle, perhaps that could be a solution to keep me from getting so congested on the 3rd off week. Thank you again for your suggestions. I am finding no information of ringing side effect tide to Cayston, but as you mentioned, definitely to Tobra & the like.
Have a great weekend.
Georgiagirl, 49

 

[bharison]

I got ringing in the ears from IV Tobramycin, so if you have had any of that, it could be the culprit. The only thing that bothers me with Cayston is my teeth become sensitive and doing it 3X a day is a challenge for scheduling. I alternate Cayston with Tobi every other month.

 

[Georgiagirl]

Thank you, bharison. Yes, I used to be on tobra flushes for 3 year, every 4-6 weeks with ENT for my sinuses. Then I was given Tobra IV and let's just say, my body protested greatly. I tried Tobi two different times and ended up with the same symptoms after a 14 day cycle: heavy limbs and trunk. IV: numb face. Amikacin IV also caused major ringing in my ears last IV round. So, I am very familiar with those symptoms. I haven't experienced my teeth being sensitive with Cayston, maybe rinsing your mouth out like after using an inhaler might help (?).

 

[jamest]

My ears ring permanently, it gets a bit worse on Tobi months - ringing is a known side-effect of Tobi, probably some other ABX too. After a while you get used to it and don't notice it anymore - silence just sounds like ringing, is all.

My opinion is to give up on the idea of avoiding permanent ear ringing, it is just a trade-off to be accepted. Better ringing ears than being short of breath (or dead) I always say!