zithromax/hearing loss ordeal - UPDATE

Discussion in 'Fibromyalgia Main Forum' started by BrainFogBaby, Jan 15, 2008.

  1. BrainFogBaby

    BrainFogBaby New Member

    5PM Thursday

    Okay, took the hearing test, waiting to hear from the ENT. The rest of my story, etc is posted below on this same thread under UPDATE.

    10am Thursday:

    I saw an ENT last night in the city last minute. He did a preliminary hearing test and said things didn't look too bad. I asked about the steroids and he said he didn't think they were neccessary at this point because my problem was more tinnitus than actual hearing loss...he said he'd like to wait until after a formal hearing test was done, but everyplace was closed.

    He ordered a hearing test for me for today. My job has made it pretty clear that me leaving AGAIN today to have the test done is going to effect my employment here (we're getting our annual reviews/raises tomorrow).

    Even if the hearing test reveals hearing loss, I think it's too late (its been a full day, almost three since the symptoms started, since I stopped taking the meds) for steriods to help? Steriods also make me violently ill, so there's that side of the coin.

    Maybe I should just wait and have the test done over the weekend so i don't get fired, and use that as amo if I need to sue the pharmacy? Maybe it will get better, but I'm skeptical. I feel utterly defeated.

    I don't know what else to say or do at this point.

    3:30 PM (wednesday)

    I just got back from Dr. Enlander and ....


    I was NEVER supposed to be on zithromax at all.

    He prescribed aclindamyacin (sp?) last week to treat my rash and chip away at the mycoplasma at the same time.

    The pharmacy filled the prescription as Zithromyacin instead. I've been taking giant doses for four days of the WRONG meds.

    Dr. E is confident that my hearing will return in a few days -- they said I might want to consult with an ENT anyway. If it does not get better....well, its probably permanent.

    I'm furious, scared, totally terrified, and feel poisioned. I called the pharmacy to report their error and raise some hell.

    The next call will be to my lawyer. Because if this is permanent, I'm suing.

    The stress and shock has me just shaking with anger and frustration. How the f*** are we supposed to get better when there's this much incompetence out there?!?!?!?


    Apparently this is more common than any of us taking the drug would like to know. My update is posted several posts below...the statistic is unnerving!

    Quick overview from last night:

    I have sudden, intense tinnitus and loss of hearing and just read it may be from the zithromax I've been taking the last four days. According to one site I found, over 70 patients have experienced permanent hearing losses or tinnitus from taking zithromax! I'm freaking out! I never knew any of this and it wasn't listed as a danger or side effect on the pharmacy print-out!

    Dr. Enlander started me on 500mg of zithromax four times daily to treat a skin infection on my back and continue our ongoing attack on mycoplasma p. I started the prescription this passed Saturday.

    When I woke up this morning, I noticed my hearing was off - I couldn't hear very well, and have terrible, LOUD tinnitus. At first I thought it was wax build-up, but further examiniation proved everything was fine.

    I continued to take the zithromax throughout the day, not thinking it was the pill (which I've taken before) and wondering if my hearing would come back. It didn't. So I started researching tonight and stumbled upon all these frightening posts from people who had lost their hearing or developed severe tinnitus from zithromax. I also found one site classifying it as an "odotoxic drug", and listing 70 cases recognized by Pfizter where tinnitus or hearing loss occured -- all were permanent!

    I'm terrified. Has this happened to anyone else? Did you get your hearing back? Did the ringing stop? Am I damaged for life?? I'm stopping taking the pills and calling Dr. Enlander in the morning, but I'm still so scared the damage is done.... since we're using high dose therapy I've already taken far more than most people do when then DO lose their hearing.

    I can't sleep, concentrate, or even hear when someone is speaking lowly to me -- I didn't hear my boyfriend whisper "I Love You" this morning on the train, and I always do.

    I know I'm just panicking but I don't know what to do!!
    [This Message was Edited on 01/15/2008]
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  2. tonia1990

    tonia1990 New Member

    Bumping up for you
  3. BrainFogBaby

    BrainFogBaby New Member

    was worse when I woke up this morning
  4. charlenef

    charlenef New Member

    i had hearing loss not from z though i went to the dr they put me on steroids to get my hearing back i still have tinnutis and now i hear to loud (hyperacusis) if it goes to long they cant help you hugs charlene
  5. charlenef

    charlenef New Member

    you need to see an ent dr or audiologist asap hugs charlene
  6. BrainFogBaby

    BrainFogBaby New Member

    Going to the dr. tonight!

    Dr. Enlander's nurse called and said to come in immediately - we'll see what they say.

    I also found this (granted, not on an accredited journalist site, but still interesting):

    "As of 1997 (the most recent data the author could find), Pfizer, the American manufacturer of azithromycin (Zithromax) was aware of 10 cases of spontaneous deafness occuring during therapy with the drug; 39 cases of decreased hearing; and 31 cases of tinnitus."

    That was over 10 years ago -- imagine the number now.

    Anyone up for a class action lawsuit? How on earth can they not put this sort of warning right on the label???
    [This Message was Edited on 01/16/2008]
  7. kch64

    kch64 New Member

    I know you're scared. I have some ringing in my ears, and I took Z-max this past Summer. However, I didn't have the type of extreme problem you're having.

    Try not to panic (I know, easy for me to say).

    I'll say a prayer that you'll return to normal.

  8. deliarose

    deliarose New Member

    I know I read abuot this before... not sure if it was in connection with zith.. and it might have been jam .. but I can't be sure.

    Anyway, this has come up before. check the archives.. and keep us posted on what Dr. E' says.

    Blimey, makes u think twice about taking any drug.

    You caught it fast.. that might be in your favour.
  9. Slayadragon

    Slayadragon New Member

    Wow, that's a scary story!

    I hope this resolves itself soon.

    It's unfortunate that dealing with the healthcare system requires us to be ultra vigilant all the time. Even if you have a good doctor and good care, bad things can happen so easily!

    I'm going be even more careful to know exactly what drugs I'm supposed to be getting before I go to the pharmacy in the future. That's horrible that they messed it up.

    Please keep us informed.

  10. EricaCFIDS

    EricaCFIDS New Member

    I am really sorry that you are going through such scary worry. It's just awful. It makes us all think and question what we take. What could you have done though? It didn't even give you that warning! I have mild to moderate tinnitus that bothers me and it seems new in the last year. I've taken a lot of Zithromax too, mainly for sinus infections, but I had a DO put me on it for a few months a couple of years ago. I also just put my daughter on it for 2 weeks in November. She's 9 and her dose was only 50mg less than mine! It's so frustrating! I hope her ears are okay. I wondered why I had the ringing in my ears so much, and now I think I know.....

    If you learn how to repair it, please pass on that information. I'm sure you will. I truly hope you can repair any damage! Please know we are all thinking of you and I will say a prayer for you. ( :

  11. Doober

    Doober New Member

    If the statistics show that Zmax was resposible for so many other cases there is your proof of prior experiences.

    If the statistics for the other meds do not show this as a root cause of hearing loss, as far as I am concern this may be a reasonable case for law suit.

    I mean, they put so many warnings out there on other meds and I have never ever seen the "loss of hearing" as possible side affects on any meds I have ever ever taken.

    brainfogbaby shows some pretty convincing stats above.

    Think about the fact that on some meds, it took 1 or 2 people to die and the med is branded unsafe. Now, we pay so much for meds because we are told of the extensive testing they go through. I am sure that during testing of this they had a few cases of this happening. did they just assume it is a temporary affect without further testing??

    All these things we hear only makes us question everything more and more.
  12. charlenef

    charlenef New Member

    contact an ent this is a matter of your hearing they told me if i didnt get there within 24hr the chances of me hearing again were slim SO I URGE YOU PLEASE CALL IF YOU HAVE NOT ALREADY charlene
  13. BrainFogBaby

    BrainFogBaby New Member

    ...appreciate the support as always guys.

    The pharmacy called back and said the manager would call back to "rectify the situation" tomorrow. I guess that means putting a "please don't file a lawsuit" bandaid on the situation.

    Pfitzer claims the hearing loss is temporary. But there's reports all over the web of people who never got it back. Granted, it's the internet...there's a lot of stuff out there that is alarmist, unresearched, influenced by other issues (mixing meds, pre-existing problems, etc.)...but still. If Pfitzer says its temporary, why on earth did Jammin's daughter have to get implants to hear again? Why are so many people on the web crying that they've been permanently damaged? And why does The Mayo Clinic warn on its own site that zithromax is an orthotoxic drug that should be monitored closely by physicians due to its potentially permanent and damaging effects?

    Anyone know a good class action lawyer who takes cases pro bono? Companies like Pfitzer should have to put a clear warning (not bury the information under "pontential side effect of ringing in the ears", as my directions warned) AND be held responsible for the damage they do to patients who weren't properly informed.

    My pharmacy? Hell, that's a whole 'nother can of incompetence right now...
  14. BrainFogBaby

    BrainFogBaby New Member

    I called and called an NO ENT in the city will see me today. A reputable one will see me tomorrow morning at 11, and that's it.

    I don't know what else to do?

    Dr. Enlander said not to worry too much, that I only took it for four days and it should be out of my system in a week. He didn't seem too worried about it to be honest.

    I don't know who to believe...
  15. charlenef

    charlenef New Member

    but my girlefriends brother has hearing loss also and they said it would go away and it didnt the ent told me any hearing loss should be checked asap they took me the second i called im not tring to scare you but inform you let us know how things go hugs charlene
  16. EricaCFIDS

    EricaCFIDS New Member

    and tell them what happened and what you need (be prepared with specifics). I would! They have all the necessary specialists at their disposal. I know money is an issue, but so is your hearing! Just trying to gently push! The more documentation you have will also help in your litigation. Waiting will help their case, not yours.....

    Good luck!
  17. bevy2most

    bevy2most New Member

    I am so sorry to hear that you have taken the wrong rx, I have become so paranoid, I just started taking meds for my fm. I got one from the pharmacy the other day, and the pill didn't match the description on the package insert. I took it back and they had given me the wrong meds. I know how bad you must feel with no hearing, I lost mine for 1 1/2 months due to a sinus infection. It is horrible.
    I hope you regain your senses, please see an ent as soon as possible.
    Please feel better soon,
  18. acer2000

    acer2000 New Member

    Go to the ER, they will scan your head and call the ENT on call..
  19. kch64

    kch64 New Member

    I think the Emergency Room is a good idea. YOur Dr. (Erlander) isn't the one who's losing his hearing. You are.

    Go get treatment today.

  20. crossword

    crossword New Member

    Only it was a different kind of medicine. As a result I ALWAYS open the package and check it out before I leave the counter. Yes, pharmacies do make mistakes. I just make sure it never happens again.