i read a long time ago about someone using tobi for their sinus infections. What i cant remember is how they said they did it? Did they just squirt it from the vial up their nose? or dilute it ? I have been considering using it depending on its ease of use, but have no recollection of how it was done. Anyone out there doing it? If so, what is your method?
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am i remembering this correctly?
- Thread starter Diane
- Start date
Hi Diane
I would not try this unless you ask your doctor first. I thought my nurse told me to try tobi but I miss understood her she meant tobramycin instead and I tried taking some Tobi with saline into my sinuses. Yikes!! it felt very uncomfortable. I do not think it is good choice. I would contact a CF pharmacist and ask what they use. I would call the CF pharmacy in Bethesda
I would not try this unless you ask your doctor first. I thought my nurse told me to try tobi but I miss understood her she meant tobramycin instead and I tried taking some Tobi with saline into my sinuses. Yikes!! it felt very uncomfortable. I do not think it is good choice. I would contact a CF pharmacist and ask what they use. I would call the CF pharmacy in Bethesda
I've been on tobramycin nasal washes for my sinuses before. The ENT prescribes it and the pharmacy premixes the antibiotic with the saline. I have never been told to use TOBI in my nasal washes, or in my nose at all and I have pretty nasty sinuses. I would contact your ENT and ask them about getting on the tobramycin nasal washed if you tihnk your sinuses are doing poorly.
Scarlett81
New member
I would definately check this one out with your doctor. I'm on TOBI and Tobra IV's regularly and I know one of the side effects is hearing loss. I had a scare with this last week, I started getting ringing in my ears and pain-so they had to alter my meds.
I asked my cf doc, and asked a second opinion also to my ENT specialist if TOBI (inhaled) can cause any hearing damage-and they both agreed yes it can. They said it's more common in IV tobra, but this does happen with TOBI too. It surpised me.
This may be a reach-and I'm not saying anything for sure-but I'm wondering if inhaling TOBI so far up into your sinuses, which is closer to the ear canal and ear nerve endings-would be even more of a risk to hearing. So please be careful! After my scare last week-I realized even more how precious our hearing is and I don't want myself or anyone else to lose it.
I asked my cf doc, and asked a second opinion also to my ENT specialist if TOBI (inhaled) can cause any hearing damage-and they both agreed yes it can. They said it's more common in IV tobra, but this does happen with TOBI too. It surpised me.
This may be a reach-and I'm not saying anything for sure-but I'm wondering if inhaling TOBI so far up into your sinuses, which is closer to the ear canal and ear nerve endings-would be even more of a risk to hearing. So please be careful! After my scare last week-I realized even more how precious our hearing is and I don't want myself or anyone else to lose it.
blindhearted
New member
My doctor had me add 1 vial of TOBI to a saline spray bottle (like Ayr), shake well. 2 puffs per nostral, twice daily. Also did the same in another saline bottle with DNAse. (I am getting this info off of the instructions he wrote. u also keep these saline bottles with the medicine added in the fridge). For me personally it didnt help my sinuses. I also tried tobramycin nasal washes, it didnt work either. All of this actually seemed to make my sinuses worse. I would call my ENT just ot make sure before trying anything...just to be safe.
Hi Diane - Jason wears a mask when he does his TOBI with the benefit of breathing it in both ways. He used to have a lot of sinus involvement. However - we started using the Flonase during what was his bad sinus months along with the TOBI (28 on and off) - ever since we started this regimem, he has had considerably less sinus problems. Hope this helps.
Jo Ann - mom of Jason - 8 w/cf
Jo Ann - mom of Jason - 8 w/cf