Controlling Sinusitis with Entocort?

Hello all, its been a long time since I have posted. This forum really helped me get through the summer of '07, and I am extremely grateful for the support I received. Battling a chronic disease is truly an incredible endeavor.

I am very fortunate in some respects. My Crohn's is now under EXCELLENT control with azathioprine; however, my crohn's was never really the problem.

For the past 3 years, my sinuses have absolutely annihilated my life. I realize that may sound silly, but I can't even describe how horrible it is. They have been debilitating in ways that my Crohn's never was (admittedly, my crohn's is mild perhaps not even warranting azathioprine). I visited Mayo, John's Hopkins, and other hospitals around the country. They were clueless on how to handle it (and in general).

Expect another interesting thread regarding that one :) It turns out that we truly are in a blind-leads-blind world! EVERYONE OUT THERE DO NOT ASSUME YOUR DOCTOR KNOWS WHAT HE IS DOING-EVEN THE WELL RESPECTED ONES. I'm sure some of you are saying "oh but really my doctor is great". Trust me - These people are NOT the best and brightest of America. Anyway, more on that later...

My question is: Have any of you with sinusitis seen improvement with
1) Methotrexate
2) Azathioprine
3) Anti-TNF (Remicade, Humira, etc)
4) Stem Cell Transplant (Just for fun)
5) Anything else...

I have only found relief with steroids and Entocort. Interestingly, I have been thinking about going on entocort again JUST to treat my sinuses!!! Unfortunately, I have to use the full 9mg to achieve relief, and I will need to take it for the rest of my life. Anyone think this sounds realistic?

Good to be back.

Thanks,
Styx

Not sure if Ides is referring to me. I spent the last 10 weeks in misery. The first 7 battling what all my doctors thought was a sinus infection. I did 2 complete rounds of antibiotics, started 2 more, but had to stop due to reactions. I took several rounds of high doses of steroids, no real improvement. In this time, I had an ENT actually look into my sinus's and say they looked awful. It was only after a sinus CT that the ENT finally said that she thought it might be a migraine and not a sinus infection. Don't even get me started on the next 3 weeks of ineffective doctor's treatment, including hospital stays. Finally, I found a new doctor who had me better the next day, and actually pain free within 5 days.

So, Yes, I agree, THEY don't know everything. And we have to be our own advocates. But if the steroids are working for you, it could be sinus or it could be CD or it could be migraine too. Have they looked at your sinus, done a CT and/or an MRI to see what is going on. I know when I first started coming here, there were quite a few people who had chronic sinus issues, so I think it is something that tends to go with CD.

Thanks for the responses!

Unfortunately, my problems are unquestionably sinus related. Mucus. You can sum up my problems in one word. Mucus.

It's absolutely everywhere. I spend 2 hours in the shower everyday draining it from my sinuses. I practically have an external placenta on my stomach once all of the mucus is expelled. Its disgusting.

Steroids do help... here is the worst part: I am intolerant of nasal steroids. My nose starts bleeding immediately. While I do respond appropriately with systemic steroids, nasal steroids just make things worse at high doses. I have to mix some budesonide in my saline wash everyday to get any steroid in my nose, but that's the best I can do without irritating it.

If anyone has a better idea for delivery, game on.

One idea that was put forth when it was thought I had sinus issues was to change the PH of my body with cider vinegar. Take 1T in a glass of water 2X day (you can add honey to make it more palatable) to make your body more alkaline and then bacteria couldn't thrive, but it may not be a bacterial thing for you. Still not the worst remedy, and worth a shot given the alternative of a lifetime of Entocort. You can buy PH strips at some Natural food markets if you want to see if it is working. EMom was one of the posters with this idea, so she would have the exact proportions. I think Keeper had it too.

I don't understand how the entocort helps your sinuses if entocort is supposedly released in the gut and non-systemic. It seems like instead of being on a high dose of entocort you could do a low dose of pred?

Fitzy - Some people actually absorb a fair amount of the steroid component of Entocort into their systems. I can't recall the exact percentage, but during clinical trials of the med, something like 15% of people had systemic effects from Entocort. Entocort drove my blood pressure way up just like prednisone does to me.