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  • Nasal polyps - I'm desperate

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    Old 10-16-2011, 07:20 PM   #1
    thyes
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    Nasal polyps - I'm desperate

    Hi everyone. I just registered here, and this is my first post.
    This might be a bit of a long read, but if someone can help it would be much appreciated.

    I'm 25 years old and was diagnosed with asthma about 3 years ago. A while later, maybe 6 months or a year, I was also diagnosed with nasal polyps.
    Asthma really isn't such a bad condition, with medications it's possible to live a normal life after all. But the polyps have been a real pain for me. I have had them surgically removed 4 times already, and have used prednisolone (6 tablets once a day for 10 days) two or three times. This steroid bombardment really helps, I get my sense of smell back and everything. But unfortunately it has nasty side effects, so it's only advised to use it like once a year.

    The first time I got surgery it helped. But the doctor I was seeing at the time didn't give me any meds to keep the polyps in check, so they grew back. From here on the operations haven't really helped much. The last one I got only about a month ago, and it improved my situation, but didn't bring back my sense of smell. I haven't had a steady sense of smell for the last 2-3 years. The thing I miss the most though is being able to breathe normally, have free airflow through my nostrils.

    The doctor who did this last operation on me told me to try a medication called Singulair. It's used against asthma, and she said that some people who have polyps aswell as asthma have reported that the polyps have simply disappeared while using this drug.
    I was shocked to discover that it actually helped, after only a day the airflow in my nostrils was significantly improved. And it lasted for about 4-5 days, now it's back to normal again. I was crushed. After 2-3 years of suffering I thought it was finally over.

    So now I'm utterly desperate - I would do literally anything to get rid of the polyps. The Singulair might take some time to work, but since it worked first and then stopped working, I think that's a bit optimistic.
    Maybe since I use the nasal spray Flixonase nasule (called Flutide nasal here in Norway) that medication kind of "crashes" with Singulair? I'm worried about quitting the spray if that would give the polyps time to grow, so I guess I'll have to ask the doctor about this.

    Medications I have been using:

    Flutide nasal (both drops and spray)
    Avamys (spray)
    Nasonex (spray)
    Singulair (tablets)
    Prednisolone for 10 days straight (tablets)

    I have read about people trying homeopathy stuff for this, but I'm sceptic - placebo etc.
    I also read that someone got rid of polyps by taking zinc tablets, I will definetely try this although I'm not sure what to expect.
    I have also used alot of Otrivin to temporarily open my nostrils, but I know that this makes everything worse in the long run, so I try to keep it to a minimum.

    I have a hard time accepting that I will have this disease for the rest of my life, like my doctors have told me. So I'm wondering if anyone here have been successful in getting rid of their polyps? Like I said I'm willing to try anything.
    Any other medications I can try? Any tips at all will be appreciated!

     
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    Old 10-17-2011, 03:31 AM   #2
    gcsjr
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    Re: Nasal polyps - I'm desperate

    Thyes:

    Polyps can be incredibly frustrating and I feel your pain. It sounds like you're on the right track with the Singulair (which made a huge difference for me and has largely kept my polyps from returning for the last 10 years).

    It's going to take some time for your nasal tissues to return to a stable state so don't despair just yet. I would recommend that you continue the medications you're on, including the Singulair and the Flutide and/or Nasonex (which are both steroid sprays). I've never heard about any issues between Flutide and Singulair (and was on both for about a year without having any issues).

    I have one question for you: has your doctor told you to stay away from aspirin and NSAIDs (like Advil)? The reason I ask is that the use of both aspirin and NSAIDs is linked to the exacerbation of asthma and polyps and many people so you should definitely not take it under any circumstances (more on this in a minute).

    There are two other things you should consider. The first is easy - nasal irrigation with a SinusRinse bottle. Irrigation does seem to help with inflammation and doesn't require a prescription (at least here in the U.S.).

    The second, and more challenging one, is something called aspirin desensitization, which helps many people dramatically reduce or eliminate polyps. A little background: there is a condition called Samter's triad that consists of adult onset asthma and polyps associated with an underlying sensitivity to Salicylate-containing medications (and foods) like aspirin and NSAIDs (It's impossible to totally avoid exposure to Salicylates because they occur naturally in many foods).

    You have all of the obvious symptoms of Samter's triad so you are a good candidate for Aspirin desensitization (which has to be done under the care of a doctor and introduces small, increasing doses of Aspirin to help desensitize your body to the effects of Salicylates - just like allergy shots - and has been very successful in stopping the recurrence of polyps). Once you get desensitized you have to take the aspirin every day, but it has been shown to be very effective in helping manage both asthma and polyps.

    One really important note: aspirin desensitization sounds like something you could do yourself but it can be very dangerous so you must do it under the close supervision of a doctor (because if you are Salicylate-sensitive a high enough dose of aspirin can lead to anaphylaxis).

    Your best bet would be to find an allergist who is familiar with desensitization (and to have the doctor test you for other allergens that may be contributing to this as well). I hope that is helpful.

     
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    thyes (10-18-2011)
    Old 10-17-2011, 08:08 AM   #3
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    Re: Nasal polyps - I'm desperate

    Wow, thank you so much! Good to hear that the Singulair might take some time to work, I was a bit put off when it worked at first, then stopped working. First of all I just want to say that it feels SO good to finally speak to someone who has experienced this themselves.
    I don't know anyone else who has this condition, and I feel like a bit of a freak amongst my friends :P

    Thank you for mentioning the aspirin desensitization. I might be confused about the medical terms in english, but I'm pretty sure none of the doctors I have been in touch with has even told me about this. Last year I moved to a new city so I haven't got a personal doctor here yet, but I will speak to someone about this asap. I've never heard about Samter's triad either, so it will be interesting to hear what the doctors have to say about this aswell.
    I did a test to see if I was allergic to something a couple of years ago, but everything came back negative. I think they only tested me for the regular stuff though, like cats, dogs, house dust etc. I'll speak to the doctors about this aswell.

    How many tablets of Singulair do you take a day by the way? I've taken 1 so far, just curious.


    Thanks anyway

    Last edited by Administrator; 10-17-2011 at 11:34 AM.

     
    Old 10-17-2011, 05:57 PM   #4
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    Re: Nasal polyps - I'm desperate

    The Singulair will take a couple of weeks to work so give it some time. I take a single tablet at night (which is the standard dose).

     
    Old 10-17-2011, 07:20 PM   #5
    thyes
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    Re: Nasal polyps - I'm desperate

    Ok I see. Hope it'll kick in after some time then

     
    Old 10-25-2012, 09:30 PM   #6
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    Re: Nasal polyps - I'm desperate

    Hey

    I have had this for almost ten years and the only thing that helps is cortisone. I know it has ugly side effects but really nothing else works! Has anyone tried aspirin desens? Is it really helping?

     
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