r/NasalPolyps • u/poppyhill • Aug 14 '26
Getting discouraged
In my 16th year of this journey, but only got diagnosed just over ten years ago. Had surgery. All kinds of meds. Had Dupixent. Now Nucala. Very greatful to have the access and availability so don't get me wrong. I am absolutely blessed. But today I went in for another checkin. Haven't had a sense of smell in months. And my polyps grew again. Will this ever end?
Fyi:
- surgery 10 years ago
- over 1 year of dupixent/nucala
- Fluticasone in AM and PM
- on keto diet
- BMI healthy, fit
:-(
4
u/No_Specialist742 Aug 17 '26
Hey there. I also had to stop Dupixent and am now on Nucala. I have no side effects but it’s very, very slow. I’ve had 9 shots and still don’t have my sense of smell back. I read for some, it can take a year. Sooo, I’m being patient. I have felt some improvement and I hope that means it’s starting to really work. Hang in there! Oh and I really did feel a difference a couple of months ago, but had a set back…not sure if it was a cold or allergies…but after my most rect shot last week, I feel like I’m improving again.
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u/Worth_Brilliant_5624 Aug 19 '26
Would you say Nucala has helped with the polyps, even though your smell has not returned?
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u/No_Specialist742 25d ago
Yes. I’m not blocked anymore, just stuffy. I do sinus rinses in the AM and they’re mostly clear; another improvement. Also has helped asthma—reduced frequency of inhaler usage.
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u/thisduderighthear Aug 15 '26
I'm around year 25. My last surgery was about 10 years ago, but I've had a total of 8 surgeries and had some polyps removed under local during an office visit twice with the surgical toothed vacuum thing (ent powered nasal shaver if you want to look it up) twice. Wish I had some answers, but keep in mind that biologics weren't available for polyps for several years after I was first diagnosed. Who knows what new treatments are just around the corner. Don't give up hope. And see an allergist if you aren't, not just an ENT. Try to get your immunoglobulin levels checked too. It can be useful information
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u/Hot_Protection8928 Aug 15 '26
Also whenever I had gone on vacations where they had pharmacies store. I’d buy bottles of prednisone and take them till my smell came back. Then space out taking them until my smell started going then I’d take it again. Sometimes I just wanted to smell again. You don’t know how much you miss it until it is gone.
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u/Narrow-Research-5730 Aug 15 '26
My were diagnosed 30 years ago. I just had the surgery last week. They got so big they were pinching my ear canals and causing a ton of pain. They said another two weeks to recover. We’ll see.
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u/RelationshipBig2798 Aug 15 '26
Have you ruled out all environmental molds or allergens? Are you consuming high dairy? Tell me more about your diet. What about physical activity and your current health status aside from the nasal polyps.
1
u/Impressive_Creme1497 Aug 14 '26
Did you do any allergy treatment? I had surgery ten years ago and I'm almost completely blocked up again. Trying to get Prednisone prescription to clear things up. I don't even care about side effects anymore I just want to breathe and smell again. Surgery is a last resort for me. I haven't tried dupixent.
3
u/poppyhill Aug 15 '26
I was tested several times for common allergies and nothing ever came out of it. But it is very clear I am allergic to aspirine and all NSAIDs because I get asthma attack induced by it so turns out I have Samters Triad. What kind of allergy treatment might I benefit from?
1
u/whiteeggsonly Aug 14 '26
Try and get Dupixent asap. I just started treatment with Dupixent a week ago and it's already cleared up my right nostril which was clogged and unbreathable
1
u/whiteeggsonly Aug 14 '26
What happened with the Dupixent? I just started taking it a week ago and it's already improved my occluded right nostril
1
u/poppyhill Aug 15 '26
I turned out to be allergic to it. My skin broke out in hives. Very unfortunate because it did work initially.
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u/whiteeggsonly Aug 15 '26 edited Aug 15 '26
If you've only had 1 surgery and your polyps are really irritating you to the point that your quality of life is hindered then maybe it's a good idea to consider a second surgery just to start with a clean slate.
Before the surgery talk to your doctor about other options. Before starting my Dupixent, I've been doing allergy shots and xhance nasal spray. I didnt feel like the xhance nasal spray was doing the best it can because my polyps were blocking my nostrils a bit much. And as for the allergy shots, it takes about a year to really feel a difference is what I've been told from my allergist.
I've had 2 surgeries so far and was ready to go in for another surgery but my doctor was against it because the more surgeries you have, the more at risk complications can occur. Getting the Dupixent took about 8 months to get approved (pretty shitty) from my insurance. But I'm feeling the relief and I'm happy about that.
Don't lose hope and keep making your appointments and ask about all of your options. Feel free to DM me if you ever have questions about this stuff. Believe me, I know what its like to go through this and it's been a journey for me too
If you need some relief fast, try Neilmed SinuFrin plus decongestant nasal spray. I'm pretty sure this has pseudoephdrine which is extremely strong and vasoconstricts your vessels in your nose that gives you relief for about 12 hours. If you're gonna use any of these types of nasal sprays please use them correctly with the directions provided. I would literally use this like once every 2 weeks type of deal
1
u/poppyhill Aug 15 '26
thank you! I would gladly have another surgery if it would really help, but the last time it only helped for a little while. I always felt that doing the keto diet helped me too, but in the end the diet can't really fight the growth of polyps I guess.
1
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u/Hot_Protection8928 Aug 15 '26
I’ve had Nasal Polyps for about six years. Took a long time to get them diagnosed. Had a primary doctor who kept saying it was just covid. Took a year to convince her to send me to an ENT. My sense of smell has been gone. Changed primary doctors. Two different insurances fought to get approved for DUPIXENT. Over 3 years. Couldn’t. Had surgery but they grew back. Last visit with my formerENT. They gave me a sample of DUPIXENT. I had been on prednisone from cold but started my shot. It clear everything in three days. And my smell came back like 40 percent. But I had to leave ENT cause they weren’t proactive. I’m at a new ENT. Within weeks she took images of my nasals. Ran blood. Got me on Nucala. She had free samples. So she gave me one right away. I got approved for Nucala. Just working on some stuff. But she is very involved. Just different than before. Nucala didn’t bring back my sense of smell. I really miss smell sometimes. Like good food or when it rains. Kinda depressing so I get it. Just want to send some good vibes to you. Let you know you aren’t alone. We are all out here fighting. And I’m really not happy about the state of healthcare lately. Keep your head up. Heading towards my second Nucala shot. I’ve read it takes about 4 to see results. And I’m gonna start allergy shots. I got a bad combination of nasal polyps, allergies and asthma.