Controlling Sinusitis with Entocort?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Styx
Regular Member


Date Joined Jun 2007
Total Posts : 60
   Posted 11/6/2008 2:01 PM (GMT -7)   
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
Male Age 23. Diagnosed/Undiagnosed with IBS/Crohn's but no one really has a clue whats wrong with me. Right now I'm assuming its mild Crohn's. History of HORRIBLE Sinusitis, PND, allergies (very rare allergy to erythromiacin). Currently taking Lialda.


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 11/6/2008 3:02 PM (GMT -7)   

Styx - Glad to see you back but sorry about the circumstances. I know we have another member that has battled sinusitis for several months. She too has been really miserable. I assume you have seen an ENT ot two. Has any of them mentioned your sinus problem as being a possible extraintestinal manifestation of Crohn's disease? There are case reports of individuals having Crohn's in the sinuses. I am going to give you a link to read. I encourage you to read the "Discussion" section that talks about symptoms and observations regarding nasal CD. I am not saying this is what you have. I'm just curious if any of your doctors have examined this as a possibility.

http://findarticles.com/p/articles/mi_m0BUM/is_/ai_64507653?tag=artBody;col1

Finding that your nasal symptoms respond best to steroids means that you definitely have inflammation as the underlying problem. Have they tested you for allergies? That too can cause lots of nasal and sinus inflammation.

The article mentioned treating chronic sinusitis with steroid nasal sprays. Has any doctor prescribed this? If so, did it work? My daughter has severe allergies and must use nasal steroid spray twice daily to keep the inflammation at bay. It works well for her.

Sorry, I am jumping all over the place with this reply. My mind is as jumpy as my body due to two stroid injections in the last 5 days!


Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 11/6/2008 3:30 PM (GMT -7)   
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.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 11/6/2008 3:40 PM (GMT -7)   
Yes Zanne, I was referring to you.....and mea culpa! I forgot that they decided yours was not sinusitis but migraine related.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


Styx
Regular Member


Date Joined Jun 2007
Total Posts : 60
   Posted 11/6/2008 3:45 PM (GMT -7)   
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.
Male Age 24. Diagnosed w/ Crohn's... some wondering if Wegener's Granulomatosis (high PR3). Right now I'm assuming its mild Crohn's. History of HORRIBLE Sinusitis, PND, allergies (very rare allergy to erythromiacin). Currently taking Azathioprine.


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 11/6/2008 4:00 PM (GMT -7)   
One recently discovered effect of Crohn's is the creation of auto-immune antibodies for several types of collagen as a result of reaction to enzymes produced by a common gut bacteria. The bacterial enzymes are similar enough in structure to those collagen types that the antibodies attack various locations in the body - be it in the gut, skin, joints or wherever the target collagen is found. The reason that steroids help is because they are general immune system suppressors. They tend to have nasty side effects and that may prevent your taking them long term. You could try N acetyl glucosamine (assuming that you are not allergic to shellfish and are not diabetic) to see if that helps - for more info on that idea, see: http://www.healingwell.com/community/default.aspx?f=17&m=1286615
That approach has the advantage that there have been no reported side effects and the stuff is about as harmless as any that you might try.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 11/6/2008 4:29 PM (GMT -7)   
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.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


eva124
Regular Member


Date Joined Sep 2007
Total Posts : 246
   Posted 11/6/2008 11:39 PM (GMT -7)   
sinus problems drive me nuts too,the only relief i find is wrking in a a/c building,i dont get runny nose i just feel like my eyes gnna pop out of my head,as for the headaches well......and the doctors will not even give me anyhting for it,mum tries hayfever meds to help,hate spraying stuff up my nose so i just kinda live with it.as for doctors i find that most of the are stupid.I got told a rotten tooth was the herpes virus in my jaw joint....thats there answer for everything,herpes .......0_o i mean if i went in with a broken arm they wld tell me its herpes......
dx 17 aug 2007
21 yrs old
13 dec 2007 resection/temp illeostomy 14 feb 2008 temp illeostomy reversed 
150mg azamun
3000mg pentasa


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 11/7/2008 11:08 AM (GMT -7)   
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?
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 11/7/2008 3:11 PM (GMT -7)   
Watch out for those nasal sprays. The commercial ones mostly have antihistamines or other drying agents. Long term use will result in chronic nose bleeds and believe me, that is a lot worse than a runny nose!

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 11/7/2008 5:03 PM (GMT -7)   
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.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 04, 2016 3:30 AM (GMT -7)
There are a total of 2,732,437 posts in 301,021 threads.
View Active Threads


Who's Online
This forum has 151185 registered members. Please welcome our newest member, monjurmuradd.
156 Guest(s), 1 Registered Member(s) are currently online.  Details
Bucko


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer