Nasal polops with EGPA

[Stevemarge]

Has anyone with EGPA developed nasal polyops. Was it painful to have them removed?

[cairneyh1]

Hi

I was diagnosed last year with EGPA and have nasal polyps. When I was on large doses of prednisone the polyps shrunk and my sense of smell returned. I am now on 5mg of prednisone and polyps have got bigger and sense of smell gone again. Recently prescribed fluticasone furoate to try to shrink the polyps.

Harry

[lisat96]

I was diagnosed with Samter's triad (adult onset asthma, nasal polyps and aspirin allergy) in 2000 and then with EGPA last year. I've had 4 polyps surgeries over the years. They knock you out for the procedure and the recovery is pretty easy. I've also had the balloon surgery and that was pretty much a waste of time since they didn't remove any of the damaged tissue. Unfortunately once you get the polyps, they tend to keep coming back. There are some other things that help shrink the polyps. A steroid taper pack will shrink them. I usually get 3-6 months of relief out of that. You can bathe them in liquid budesonide if your doctor will prescribe it for you. Basically you lay with your head hanging over the edge of the bed and squirt the contents of the budesonide ampule in your sinuses. If your polyps aren't too high in the sinuses, the budesonide or fluticasone sinus sprays will help some as well. The only "good" part of the EGPA diagnosis is the daily prednisone which has been keeping my polyps small enough to avoid another surgery at this point. Good luck!

[citygirl1234 in reply to lisat96]

Hi Lisat96,

Thank you for sharing your experiences. I have GPA with mostly sinus involvement which was diagnosed in August and was wondering if you had your polyps removed via FESS (Functional Endoscopic Sinus Surgery)? My ENT is planning a similar procedure for me as I have a few polyps in one of my maxillary sinuses (aka the one in my cheek if I understood correctly) as well as lot of general gunk and I wondered how effective you found it? He told me that they can remove some tissue at the same time to help prevent future 'drainage issues' (which is what contributes to the sinusitis problems) but I couldn't find much information about whether this works for patients with vasculitis. I know GPA and EPGA are different but there is a lot of sinus overlap and as you have also spent a lot of time with ENT, I was wondering whether you have found that being diagnosed with EPGA has had any effect on your treatment by ENT?

[lisat96 in reply to citygirl1234]

Hi citygirl1234,

I've had polyps removed by FESS. My first surgery they opened up my sinus passages and it was helpful. Before that surgery my sinuses were 90% blocked on the CT scan. It didn't resolve the issue, but has kept my sinuses from ever being so completely blocked again. The recovery for that surgery was a little worse than the others, but still not bad. Being diagnosed with EGPA has made my treatment easier since with the continual low dose steroids, I haven't had to do a steroid taper pack or take antibiotics for a sinus infection for the last year. The ENT was scoping my sinuses every 3 or 4 months before and it almost always resulted in medication for sinus infection and steroids for the polyps. Then the polyps would start growing again as soon as I finished the steroid taper. After the last year of checks while on the low dose steroids, the polyps have remained small so I only need to see the ENT once a year now.

[citygirl1234 in reply to lisat96]

Good to know, I'm glad it helped you. Getting rid of the sinusitis finally must have been a great feeling, hopefully things will continue to stay that way

[JGM1]

Hi , I was diagnosed with EGPA last year and have had blocked sinuses for over 2 years and no sense of smell for most of that time . Various drugs and sprays haven’t helped so I’m in for surgery tomorrow (FESS). It’s a general anaesthetic for the procedure so I’m hoping it’s painless ! I’ve been told it will be uncomfortable for a couple of weeks after but I’ll take that if it resolves the problem after 2 years of being blocked . Good luck

[Cherrynass]

I have not yet been diagnosed with EGPA but I’ve had approx (yes lost count!) 14 nasal polyp surgeries! My most recent op which was FESS has been incredibly successful alongside daily use of Neilmed sinus rinse which I strongly believe in. The op is fine - should be painless but a little uncomfortable during recovery but after a few days pretty much OK. DO use the rinse - it literally washes all the muck out!