Azithromycin Desensitization Need Opinions Please

Posted by healthybon @healthybon, Aug 22, 2023

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

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

@healthybon

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?

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Hi Bon
I’m not sure whether this has been mentioned elsewhere, but has anyone suggested getting a test for the amount of azithromycin in your blood? I had high levels a couple of times and my bowels and other side effects seemed worse - improved slightly when levels lower.
I believe it is a specialized test that has to go to a lab in Florida- Dr Swenson would know

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I am allergic to clarithromycin. Anaphylasis. My old dr told me I could be admited to hospital, and one drip every 15 minutes from IV would make me tolorate it, as long as I took it same time every single day. He was head of Pulmonary at a huge NY hospital so I tend to believe him.
I have yet to need to do this, and hope I never do. This is the 3rd myctobacteria infection I have had.
The drugs were tough.but I did it. Im older now, and not so sure. But, yes you can desensitize and that is how he told me it was done.

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Commenting on @dulwich note about blood levels. Personally, I think this is highly important when there is drug intolerance or non effectiveness of a drug. Yes, there is a lab in FL that does check Azithromycin blood levels. This is not a standard test or procedure yet, but I think it is important that we begin to ask for this when indicated.
When I was taking triazole antimicrobials for lung fungal infection I was at a way too high blood level on a regular dose of Noxafil and then later was taking Voriconazole, I was at the highest dose allowed and did not reach therapeutic blood levels. I only know this because I insisted on drug blood level monitoring. I know this is harder to do on Azithromycin since maybe only one lab has the test, but since Azithromycin is the cornerstone of treating MAC, there needs to be more therapeutic blood monitoring for both sub-therapeutic levels and elevated levels that may cause serious side effects.

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Hello
I took azithromycin, ethambutol and Rifampin for 4 months, and I experienced an irreversible hearing loss. My ophthalmologist warned that Ethambutol could cause vision loss. I have glaucoma which makes it even more dangerous to take ethambutol.
I was put on a pause for antibiótics, and decided to change doctors .
My current infectious disease doctor is recommending airway clearance and frequent monitoring with CT scan and mucus cultured.
I may restart soon using Clofazamine, Moxiflacin and one other antibiotic. I caution anyone who is starting azithromycin because the damage can occur very quickly. In my case, it happened in 4 months .
I have since been told by 3 ENT specialists that Azithromycin causes hearing loss. Hearing aids do not compensate for the loss. I’ve tried 2 or 3 expensive ones (otican. Resound). Hearing still muffled.
I was told nothing more can be done .

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thanks for sharing this info with me. the azithromycin caused me diaareah, gi problems, tinnitus, and who knows what else. i just can't tolerate these strong medicines. they make me sick, "all over".
I'm doing all the airway clearance stuff, etc........there has to be quality in life and a lot of doctors ignore when you tell them the meds are not agreeing with you. it's a hard decision to make , but feeling sick all the time is something I can not deal with mentally...it's very depressing. So sorry you can't get help with this now.

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@dulwich

Hi Bon
I’m not sure whether this has been mentioned elsewhere, but has anyone suggested getting a test for the amount of azithromycin in your blood? I had high levels a couple of times and my bowels and other side effects seemed worse - improved slightly when levels lower.
I believe it is a specialized test that has to go to a lab in Florida- Dr Swenson would know

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thks for the info dulwich

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@maryjanechilds

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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Hi I am a newly diagnosed SIADH person and I'm sick right now and taking a z pack for 5 days. How long did you take it before your sodium dropped? Thanks for responding ahead of time.

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@lola1971

Hi I am a newly diagnosed SIADH person and I'm sick right now and taking a z pack for 5 days. How long did you take it before your sodium dropped? Thanks for responding ahead of time.

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Hello @lola1971 and welcome to Mayo Connect. As I was unfamiliar with SIADH, I went online and found some information from WebMD. Here is a link that explains it for others who might be interested.
\https://www.webmd.com/a-to-z-guides/what-is-siadh

Could you share a bit, as you are comfortable doing so, what symptoms led to this diagnosis and how you are feeling now?

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@lola1971

Hi I am a newly diagnosed SIADH person and I'm sick right now and taking a z pack for 5 days. How long did you take it before your sodium dropped? Thanks for responding ahead of time.

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Lola, I think you need to be certain that the doctor prescribing the z-pack (azithromycin) is aware that you have SIADH. What illness was this prescribed for?
Reading the article
Also, most of the people posting in this particular discussion are taking antibiotics, especially azithromycin, long-term (one to two years) for an difficult-to-treat infection deep in their lungs.

Here is an excerpt talking about antibiotics and SIADH from the NIH:
"Several medications have been implicated in medication-induced SIADH, but antibiotics are rarely on the list [5]. There are a handful of case reports implicating trimethoprim-sulfamethoxazole, ciprofloxacin, cefoperazone/sulbactam, rifabutin, azithromycin, and nitrofurantoin. However, these have occurred in elderly individuals, in the presence of other comorbidities, and concomitant use of diuretics and antidepressants [6]."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10105516/
In your situation, I would probably get my sodium checked after you finish the antibiotics, unless you feel symptoms this weekend. In that case, since it is a holiday, you may need to call your clinic's emergency number, or visit an emergency department for an IV.
Please let us know how you are feeling.
Sue

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@hopeful33250

Hello @lola1971 and welcome to Mayo Connect. As I was unfamiliar with SIADH, I went online and found some information from WebMD. Here is a link that explains it for others who might be interested.
\https://www.webmd.com/a-to-z-guides/what-is-siadh

Could you share a bit, as you are comfortable doing so, what symptoms led to this diagnosis and how you are feeling now?

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wonder what specialist or area of medicine diagnoses or tests for SIADH and which tests were performed.

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