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Many IBD sufferers also deal with sinus polyps.  I developed extreme sinus issues a decade before my colectomy/colitis.  Like, debilitating type nasal allergies (not really an allergy) and blocked, inflamed sinuses.  I have not been able to smell or taste for 18 years due to polyps and inflammation in my sinuses.  They only thing that helped was prednisone, which I would take 1x a year around the holidays just to enjoy eating. I have tried everything. I’ve had four polyp removal surgeries to no benefit. They just grow back. I know now, this is due to MCAS and histamine intolerance. Out of desperation to smell and taste again, I tried Sinuva; they are these tiny bird cage looking stints made out of hardened mometasone furoate that get placed up into your sinuses in hopes of keeping them open and delivering a low dose of mometasone furoate to the lining. #fail. #expensive.  

After three months, I hacked them out while driving (they are made to fall out or be removed at three months).  The problem was they tiny cage design just catches all your snot so you STILL can’t taste and smell.  Anyhow, it was either back to budesonide respule rinses (which never did much) or do nothing. 

My doc and I decided to try mometasone furoate in powder form.  You get it compounded from a pharmacy (I use Advance in Pennsylvania).  They send it to you in capsules, you break the cap open and use in your saline rinse (.6mg). After using it just TWO days b.i.d. (and now for FOUR weeks), I can smell and taste again and have ZERO nasal inflammation.  It’s like a miracle sauce for my sinuses.  It’s better than prednisone ever was. And….just $46 for two month supply.  It’s possible to use it long term as well. I’m now using it q.d. and still have the same benefit.  Just wanted to pass this on in case anyone else has suffered as much as me with your sinuses!!  Be well!

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I had one ENT talk to me about steroid sinus rinses as a post-polyp-surgery measure. Fortunately I found a steroid nasal spray (after several failures) that shrank my nasal polyps and keeps them essentially nonexistent. It’s QNasl. I do have to have an argument with my insurance company once a year to get it covered. I use it *after* a saline sinus rinse.

Hi Scott!  So glad this works for you and I will keep this on my radar if mometasone stops working (hope not).  I had to fight to get xhance nasal spray; it was insanely priced at $547/16ml (almost the same as QNasl $283 /6ml)!!!  The company sold direct to patients for $109 through an online pharmacy (still out of many's price range, mine included). ;-0 Crazy. Pharma.

You may be getting a significant systemic exposure to the mometasone through the saline rinse. I don’t know that it will matter, but my guess is that it will be higher than a nasal spray. I’d suggest keeping an eye out for any steroid side effects. It sure is nice to smell dinner again, though.

It’s always worth checking the manufacturers web site for so-called “coupons.” They can drastically reduce the prices for some of these ridiculously expensive medications. I know there’s one for QNasl.

Last edited by Scott F

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