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Azithromycin Desensitization Need Opinions Please
Hi everyone,
I really need some input, I'll explain.
Dr. Swenson started me on Azithromycin and Ethambutol four weeks ago. 3 times per week.
The third week in, my ears started ringing and hurting inside, constantly, my cheeks get red,..I got some canker sores on my tongue (not sure if it's from the drug or not). Went to ENT for a total check up today. CT Scan, Hearing Test. All came out ok. The ENT suspects it is the Azithromycin causing these side effects. My dr. said it is vital that I take these two drugs if I want to get rid of the MAC.
Here is my question:
My dr. suggested I see an allergy/infectious disease dr to have them do a DESENSITIZING PROCESS FOR THE AZITHROMYCIN on me. When I glanced online about it, it scared the daylights out of me. It seems like there are a lot of risks of what it can do to you. Does anyone know of this, or have gone through this.. I welcome comments. I may have to bite the bullet and put up with the side effects of the Azithromycin, or else I will never get rid of this MAC.
Have any of you just kind of tolerated the disturbing side effects because you knew you have got to try to get better by taking the meds? I Really need help here. Thanks, Bon
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Hi Bon,
I had issues including tinnitis and ear pressure/pain with taking Azithromycin as well. I was placed on Clarithromycin and the ear pressure/pain stopped however the tinnitis continues. As for sores on the tongue, I developed these when taking Moxifloxacin several years ago, they went away when I stopped taking the med. Good luck and hope your doc can find meds that will work with you!
Did the med get rid of your Mac Nancy?
@healthybon maybe take an antihistamine with the azithromycin. Not sure it will help with tinnitus but maybe mouth sores. Perhaps worth a try?
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1 Reactionnancy thanks for your input......the sores seem to have gone, I am starting the regimen today in hopes I can tolerate it......I've got to try to bring down the Mac. I am so sensitive to medications....no matter what I take it "gets me", so i may as well try to tolerate the Azithromycin. Dr. Swenson isn't overly concerned about the side effects I report. I guess I have to trust him.
Bob, azithromycin caused my sodium to tank to dangerous levels (I have SIADH) so my doctor switched me to Isoniazid. I think azithromycin is the gold standard but there are other alternatives.
Mary Jane
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1 ReactionSorry, I meant Bon. Auto correct jumped in.
I did convert to negative sputum culture after 12 months on the Clarithromycin, Rifampin and Ethambutol treatment. I still have 4 months to go to complete 12 months of treatment after the first negative. I had 2 cavities prior to treatment and now I have one very small cavity which I hope will collapse by the next CT scan. I am faithful in doing nebs and airway clearance at least 2X/day. Hope this helps
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1 ReactionTime for a different doctor! And...so far, I've read about only ONE patient that was "cured" of MAC. I took the 3 meds for 14 months; finally just stopped taking them. A good doctor will change your meds; there are more out there.
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1 ReactionI do not mean to scare you but I got ringing in my ears from the big 3 and had my hearing tested. My hearing was OK but they said there was nothing they could do about the ringing. I still wonder if this is true and am going to search about this further. I did have to go off the ethambutol because of eye problems but you are not taking that and after being off it for 4 months was OK.
Hi Laura,
Thanks for your reply. I am taking Ethambutol..but I get my eyes checked by an opthomologist every 2 months, plus I do the color eye test at home as well. I keep a close "eye" on it.
As far as the Azithromycin is concerned, the ringing is tolerable...it's not super loud...so I am going to try to stick with it as Dr. Swenson feels its my only hope of knocking this damned disease down. Otherwise, it could progress into cavities and worse bronchiectasis (which currently is mild)....... He told me he has patients that use these two only and are successful. Once I progress then the third medication is required, and I know, without a doubt that I would not be able to tolerate it. It's kinda, your damned if you do, and you are damned if you don't. How long have you been off of the Azithromycin. Did the ringing start from it?