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Rifampin discontinued due to side effects. Looking for feedback.

Posted by kayskid @kayskid, Aug 21, 2020

Pulmonologist stopped Rifampin after 4 months. I have been sick with nausea the whole time and starting to bruise. (I have a coexisting bleeding disorder). He said continue Ethambutol and Azythromycin 2 more months then repeat CT and culture. I am worried that I will be off and on these meds for years, so tried to stick it out, but now my teeth are stained, I have lost weight and now the bruising. (I must have been a sight as I was neaseated and then tried to avoid the elevator by walking up 3 flights with a mask on then became short of breath and dizzy). Poor judgement but i never had trouble with stairs before. It scared me.

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irene5 Irene Estes | @irene5 | Sep 14, 2020
In reply to @poodledoc "Yes It was officially Negative August 27. I have a second sputum sample cooking right now,..." + (show)
@poodledoc

Yes It was officially Negative August 27. I have a second sputum sample cooking right now, final results due Sept 24. I had to stop taking Arikayce due to Tinnitus. Still on Azithromycin and Ethambutol. I strongly believe the Arikayce was responsible for my culture conversion, even though I only took it for 10 weeks. Thanks for asking, Bill

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@poodledoc I am sooo happy for you! I was changed from the azithromycin to clarithromucin because the combo (Arikayce) gave me tinnitus as well. Since the change I have no more tinnitus. God willing your second sputum will be negative as well, but if you have to go back on the “mix” maybe changing azithromycin to clarithromycin might do the trick. So glad for you! irene5

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poodledoc | @poodledoc | Sep 14, 2020
In reply to @irene5 "@poodledoc I am sooo happy for you! I was changed from the azithromycin to clarithromucin because..." + (show)
@irene5

@poodledoc I am sooo happy for you! I was changed from the azithromycin to clarithromucin because the combo (Arikayce) gave me tinnitus as well. Since the change I have no more tinnitus. God willing your second sputum will be negative as well, but if you have to go back on the “mix” maybe changing azithromycin to clarithromycin might do the trick. So glad for you! irene5

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Irene, I am having trouble finding that Clarithromycin is less likely to cause tinnitus than Azithromycin. Did one of your doctors mention that to you? Thanks, Bill BTW my tinnitus is much better after stopping the Arikayce for 1 week, so probably not a permanent side effect as I had feared.

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irene5 Irene Estes | @irene5 | Sep 14, 2020
In reply to @poodledoc "Irene, I am having trouble finding that Clarithromycin is less likely to cause tinnitus than Azithromycin...." + (show)
@poodledoc

Irene, I am having trouble finding that Clarithromycin is less likely to cause tinnitus than Azithromycin. Did one of your doctors mention that to you? Thanks, Bill BTW my tinnitus is much better after stopping the Arikayce for 1 week, so probably not a permanent side effect as I had feared.

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Oh good. Mine wasn’t permanent either, and I was on azithromycin for ever! I don’t know about the stats or studies concerning clarithromycin and tinnitus compared to azithromycin and tinnitus, but I am on it everyday. It does not upset my stomach either. Again I am thrilled for you! Irene

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 19, 2020
In reply to @rits "Chicago is a beautiful city with a lot of interesting things to see and do -..." + (show)
@rits

Chicago is a beautiful city with a lot of interesting things to see and do - when there is no quarantine. However, like big cities everywhere, we are not rv friendly which I
Iearned a few years ago when friends doing a cross country trip stopped here for a few days. I hope you do come and I would be honored to show you my city.

Bluffton sounds perfect. I look forward to seeing the video.

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Hello Rita! This post here of yours got by me because I was working on a remodel of my rental property. Yes indeed! When this pandemic ends we will def have to visit each other's city, in my case Town. To date, I have had four members visit Bluffton.

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