Behcet's and sinus problems

[gedlyn]

This is my first post here... I was curious if anyone else with Behcet's has had sinus issues? I was diagnosed with Behcet's this past spring, though I've been showing signs since I was 21 (27 now). I am taking colchicine now to help with symptoms.

When I was 16, I had surgery to correct a deviated septum but after a few years, I began experiencing sinus infections regularly. About three years ago, I started to get a handle on them. Using saline rinse and taking an echinacea supplement at the first sign of a cold helped a lot. Doing so also helped prevent the cold from developing into a sinus infection. I haven't had a sinus infection within the last three years.

In August, I moved to a new state (in the U.S.) with a drier climate and a significantly greater elevation. Within a few weeks, I was experiencing cold like symptoms and/or allergy symptoms. I had such a bad sore throat at one point, I went to the doctor to check for strep throat. It wasn't, and was actually just giant ulcers in the back of my mouth. From there, the sore throat began to subside and I began having a stuffy nose. I tried saline rinse, nasal spray, and echinacea, though I admit, I could have done more than I did. The stuffy nose turned into a cough, largely triggered by post-nasal drip.

A couple weeks ago, the cough had gotten so bad, I finally went to the doctor. She diagnosed it as a sinus infection and gave me some antibiotics to take for a week. Because of the cold and allergy symptoms, I'm not sure when the actual sinus infection began, but by the time I saw the doctor, it was definitely a sinus infection. After seven days of antibiotics, I was still miserable. I called my doctor and she recommended saline rinse and nasal spray. I had been doing some of that but at that point, I started being much more diligent about it.

This past Thursday night, I was feeling miserable and hopeless. I sent an email to my old rheumatologist asking for his advice. Bless his heart, he responded to me early the next morning and recommended I try getting a prescription from my doctor for prednisone. *Side note: Since moving, I have yet to establish care with a rheumatologist but have an appointment scheduled with one for early November. I have established care with a primary doctor.* Luckily, my new primary doctor went ahead and sent in a prescription for predinsone, which I began yesterday morning. I can't tell if it is helping or not. I've been in better spirits since starting, but still coughing and having lots of stuff come out of my nose.

My primary also sent in a referral for an ENT. I haven't seen an ENT since I had surgery on my nose, and I'm concerned that if the predinsone does not work, it might mean I need a more serious intervention for my nose. At this point, I just want to feel better but its so hard when my body just wont respond to all the "normal" remedies. I can't help but think that the Behcet's is largely why I can't find relief from this sinus infection, especially since I was able to recover from them in the past before the Behcet's flared up.

Has anyone else had a similar experience? My body is aching from all of the coughing and I would appreciate any advice or knowledge anyone might have.

Thanks!

[Amy-Tenacious1]

One of my first symptoms was a cough. And the more you cough the worse it gets. And if it has anything to do with collagen the coughing actually does damage little by little. After years of coughing and codeine cough medicine and being called a junkie that just wants meds I found and article about neuropathic cough and asked my doc to prescribe Lyrica. 2x75mg of Lyrica when I go to bed mostly keeps the cough at bay. Nights have been especially bad and fiercely air conditioned rooms. Nowadays I need cough medicine mostly when I get and flu, which often turns into a flare. Then I need Medrol. Ephedrine in the cough medicine makes it work even better. I get stuck with nasal sprays trying to keep my sinuses open with a flu and weaning myself out of them is hard. But then I just try using them at night and little by little leave the other sinus without and then I can leave it out.

I also get sore throats that mimic streptococcus A. And yet it isn't.

I don't think antibiotics will help you unless it actually turns out to be strep throat.

But there are no "normal" remedies to what we're going through. Maybe someday.

I have a meeting with a new doc on the 23rd. Let's see what they have to say.

[Shari1218]

Wow I’ve always had sinus problems but nothing like you are dealing with.

I think drs just wing it unless they are specialist in Behcets.

My rheumatologist in Birmingham Alabama says Behcets doesn’t cause Petechia. But every time I’m in a flare I get these pencil eraser sized and smaller red spots all over my left arm. It’s so embarrassing that I want to wear long sleeves all the time.

Also I’ve been on Colchicine for 4 years now and haven’t had any ulcers!! But now my insurance had dropped coverage on Colcrys and it’s generic Colchicine unless you are diagnosed with Gout, and I’m not! The only drug they will cover is Mitigare. That stuff is crazy expensive!! So I’m going to take my chances on stopping it!!

I pray for all Behcets patients, please pray for me too!

[rooser1 in reply to Shari1218]

yup- also had to be on mitigare as generic colchicine wasnt covered. so weird.

[jzeis]

I've had chronic sinus problems for years so I'm always sorry to hear about other people with the same thing. Here are some articles that mention sinusitis in BDers:

1) Prevalence of chronic rhinosinusitis in the setting of Behçet disease (2015)

ncbi.nlm.nih.gov/pubmed/254...

This study found that BDers have more sinusitis than healthy people in the study, and the left sinus tends to be worse (which is exactly my problem)

2) Rhinosinusitis in a patient with Behcet's disease (2005)

Full article here: sciencedirect.com/science/a...

Joanne Z.

[rooser1]

You say coughing from sinus infection- does this progress into bronchitis? i used to get a ton of sinus infections, each one turning into bronchitis. lung involvement is common with behcets though.

I learned I was immunogobulin A (igA) low. simple blood test. affects mucus membranes as well as respiratory. Makes sense. I always wondered why I got bronchitis so easily and when no one else around me had it. so0o0o0oo I now supplement with NAC. amazing for boosting immune response and thinning mucus.

usually when I have bronchitis, it last a few weeks. antibiotics dont do sh*t, its just inflammation. so I pop 2 600mg NAC three times daily, and omg- last time i had it- it took THREE DAYS from start to finish. NOT TWO WEEKS.

I highly recommend them. Google research for yourself.

amazon.com/NOW-NAC-600-100-...

PS- also in USA too.

[Lettie999]

I have always had sinus problems, on a day to day basis it is just a blocked nose but during pregnancy and cold and flu season it is hideous sinusitis. I take colchicine and methotrexate so my BD is under some control but my blocked nose never goes away.

[OtherWords]

Im not sure whether this is going to all the replies on sinus issues and Bechets. Aftrer reading comments its good to know Im not the only one. When I was a baby I had chronic Bronchitis. Since Mucous plays rapant with sinus ailments and Bechets is a vasculitis the connection is understandable. Wish GPs were trained to make these connections.

[SCMW]

Yes I’ve suffered from sinusitis and tonsils problems for as long as I can remember. However since stating colchicine I’ve had no episodes of tonsillitis or voice loss, plus the thing that nailed the sinus issues was going dairy free. Honestly wished I’d know that one sooner. Hope that helps.