Pneumonia’s being caused by BECHETS!

[Jennifer4284]

Hey y’all. I need some advice. My Bechet’s is now attacking my lungs. Not one but both. I’ve been in the hospital for the past week so sick. With all the tests the ran the found it it my Bechet’s attacking my lungs. The USA has no f……. clue how to treat Bechet’s. I would love some advice. I don’t want to have another pneumonia where 4 lobes are infected and I can only breath through 2 lobes on the top of my lungs. This has been happening more and more frequently, yet they called them “asthma exacerbations.” Through going back through my chart and scans they now know it’s Bechet’s. I’m scared.

[magician]

Hello Jennifer4284!

Sorry, I have no advice to offer. Except to continue looking for responsive doctors. I have been reading about the renowned expertise of Dr Yasici on BD. The last time I checked, he had a practice in NY. Might be accessible to you?

I wish to express “get well” to you and to thank you for the information. Your post now makes me think that my childhood “asthma “ must have been due to BD - and your post is the first ever indication to me that it might have been BD all along. So thanks again.

I grew up with breathing difficulties on top of humongous lesions in my legs. The lesions were examined by dermatologists, I swallowed steroids till I got the “Moon face” and applied steroids. Nothing worked.

The breathing difficulties were attributed to asthma.

Then one day, the lesions just healed. On yet another day, years apart, the “asthma” stopped. On both counts, undiagnosed/misdiagnosed and no medication.

Eventually I “graduated” to horrible countless lesions in the mouth. They also stopped just like that - undiagnosed/misdiagnosed, no medication.

But my “luck” burned out. Suddenly I found myself with very bad case of uveitis, both eyes. This eye involvement les to diagnosis of BD. With eye involvement, I dare not go without medication. I have been on biologics since 2012.

On hindsight, I feel that I can attribute my asthma/skin improvements to lowered stress levels.

The uveitis jolted me into a quest for ways to lower my stress levels. I have been practicing yoga, taichi, meditation, etc etc etc.

My eye involvement started during a high stress level period in my professional career. However, despite having retired and being infinitely less stressed, my uveitis persists.

There is a possibility that my uveitis would have been worse without the stress reduction practices. But with BD it is all a guesswork.

Do not be discouraged, please persist in looking for a responsive doctor !

Wishing you all the best

[Jennifer4284 in reply to magician]

I can relate to so much of what your saying and have gone through! Finally being validated by the hospital oh hey you don’t have ssts it’s your Bechet’s. I was like what I’d never heard of it affecting our lungs before. What’s worrisome to me is the 30% mortality rate. I started out with lesions on my hands, and it escalated quickly from there through my 20’s now into my 30’s. Where it’s getting worse.

I just myself got past an awful blight of uveitis in my eyes! The pain was unbelievable. Which that’s another things that’s over whelming to me as a patient and I’m sure others with Bechet’s. Drs don’t take the pain and inflammation as serious as they should. So the 6 nights I spent in the hospital were worse than being home! All besides getting the proper help for my lungs.

I’ve heard of this dr in New York before. That’s about a 10 hour drive from Maine where I live. I think it’s about time to see if I can send my records to this dr for a 3rd opinion! Oh the steroids. It’s like we live with them or with them. I hate them.

[LisaNZ]

I’m sorry that you’re having a difficult time. Pneumonia is a terrible thing. I had childhood asthma but it was triggered by stuff like chlorine etc, or if I got a cold. I would occasionally take ventolin and it helped.

Around two years ago i couldn’t stop coughing for about six months. It was especially bad at night and when I laid down. Thank goodness it wasn’t during covid!!! Anyway, I was eventually diagnosed with adult asthma. I take Breo which is a steroid inhaler. It has helped a lot, but I still cough quite a bit. Anyway, I asked both my rheumatologist and the respiratory specialist I saw whether they thought it was behcet’s, but they both said no. I’m not convinced though.

I just moved house and was hoping it would stop and that maybe it was something in my old house but it’s been two weeks and no change. Cross fingers!

Anyway, I’m not sure my reply is helpful or relevant, but just thought I would mention it. All the best with your recovery ❤️‍🩹

[cherie1w74]

Hi

Have you had covid at all? I just ask because I have and it has left long term damage to my lungs and now when I get a flare up the inflammation from the behcets combined with the covid damage causes breathing difficulties so it's not so much the behcets attacking my lungs but the long covid damage making things worse. I'm now having 3 monthly steroid injections and taking colchicine which are both helping. I hope you manage to find a good doctor.

[Jennifer4284 in reply to cherie1w74]

Make sure to keepAdvocating for yourself!!! My Bechet’s was 5 different diagnoses until my OBGYN put it all together.

Pneumonia is awful I’ve only had it three times full on. The first time right before covid. Only two lobes were infected out of the 6 in my lungs. I was diagnosed with Reapiratory Fauilre with Hypoxia for the first time. I had driven myself to the ED as to minor upset my kids. Stupid mistake! The second time just after covid hit, and now this third time which was the most scary part of it all!!! 4 lobes infected, oxygen at 68 I called 911 for help.

[jzeis]

Hi Jennifer, I'm so sorry you're in this situation because I know how it feels. A few years ago, I was hospitalized for pneumonia when I was feeling sick, feverish, coughing, had trouble catching my breath, and my pulse-ox readings were in the 80s. Xrays pegged it as pneumonia.

They put me on IV antibiotics for 4 days and it didn't do any good. Then they called in the head of pulmonary services, and I asked him to call my BD specialist, because I had a strong feeling these problems were worse because of BD lung inflammation, and I prob needed to be on high-dose IV steroids instead. He refused to call my doctor because "Behcet's never affects the lungs." By the 5th day, I was up to 3 liters of O2 and getting worse and had trouble walking 10 feet to the bathroom.

He finally did a bronchoscopy and took fluid samples from the base of my lungs. There was no infection there after all. He finally called my doctor and then put me on high-dose IV steroids. Which turned everything around pretty fast.

Bottom line, BD CAN affect your lungs, in ways that a lot of pulmonologists (who've never had a BD patient) wouldn't expect.

Hugs for you, and I'll post some lung-related medical journal links for you in a few minutes.

(PS-- In this case, I was eventually diagnosed with cryptogenic organizing pneumonia (COP, previously called bronchiolitis obliterans organizing pneumonia (BOOP). COP occasionally gets mentioned in Behcet's articles, but not often.

Here's an article written by a Boston BOOP expert. I had a consultation with him a few weeks after i was discharged from the hospital. In the article, Behcet's is mentioned as one of the systemic diseases that can be a cause of BOOP / COP. For treatment, I fell into the category of high-dose IV Corticosteroid treatment because of the speed that it got worse.

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Joanne Z.

[Retriever]

I too have neuro Behçet’s now affecting my lungs. I’ve had pneumonia 6 times in the last couple of years and it seems that I can no longer mount an immune response to pneumococcus. Guess it’s always going to be an issue for me. Hey ho. Just have to ensure I get to the GPS quickly for antibis - not easy to get an appointment these days. Go well one and all. M

[MrsR_75 in reply to Retriever]

Goodness me, this has hit home for me. I also have neuro BD.

I first had pneumonia and a PE in my right lung 10 years ago when I was pregnant.

I’d just been diagnosed with BD. I was pregnant, collapsed and was airlifted to London. My baby and I pulled through, but it was a traumatic time.

I have had multiple chest infections and pneumonia three times since then, but have always been told it’s just “one of those things“ and no apparent link with the Behcets.

Thanks for sharing.

[Miataman]

I love in the USA, I would highly recommend going to the Mayo clinic in Jacksonville Florida. They have several doctors dedicated to BD there. I have lousy insurance and it paid everything there.

[Hidden]

I hope you've healed since I'm replying so late. So sorry you're suffering with such a scary issue! Did drs increase your prednisone to at least 40-60 mg a day? I was wondering if you take both ventolin and advair inhalers. I haven't had bronchial asthma and pneumonia flairs since living in very dry climate in northern New Mexico. It's been a godsend. I moved from the south where it's rainy and stays humid year round. It is awful for lung and bronchial issues. Every once in a while if I feel like I can't catch my breath, I use Ventolin first to quickly work on lungs and open them up and then 20 minutes later use Advair to make medicine last longer. When I first started having bad bronchial flairs years ago and was put on inhalers, the inhalers didn't seem to help much at all. It was frustrating and scary. Then my new rheumatologist gave me what is called a spacer chamber that allows inhaler medicine to go much deeper into lungs and is much more effective on lungs than puffing directly on inhaler with mouth. Who knew such a small detail would be a huge benefit. I noticed the huge difference after first using it. But I really noticed a massively positive difference once I moved to drier climate. Very few bronchial asthma issues.

I stay on 2 liters of oxygen with cannula only at night for nocturnal hypoxemia. It really helps strengthen lungs and organs to get oxygenated blood flowing thru body.

Drs in USA are NOT educated on Behcets like they should be. They are very intrigued when they get a patient who has Behcets, because we make their medical resume more interesting. But when a bad flair or sudden crisis hits, they look like deer caught in headlights and they scramble like rats on acid. If they have god complexes, they won't try to find and reach out to more knowledgeable drs on Behcets to simply consult with them. The god complex drs are the dangerous ones. If you have a dr like that, quickly find another for your own sake. After 40+ years of surviving Behcet's, I've realized that you are your own best advocate. Don't ever forget that drs work for you and should take your symptoms and concerns seriously. And they should listen to you and treat you with respect and dignity. Remember that not all high profile drs might the best for some Behcets patients. If you're not getting positive results or if your dr is not treating your symptoms aggressively enough, then try to find another dr asap. I found a team of drs in a small mountain town and most of them are very good. When the pandemic hit, many moved or became traveling drs. The ones who replaced them have been hard to tolerate. I speak my mind and they're not used to patients who demand them to learn more about Behcets instead of thinking about how to keep govt covid funding and bonuses coming to their hospital. Right now their covid tunnel vision isn't helpful at all to patients who don't have covid. And that they want to stay covid tunnel vision when things are trying to level out and move forward is concerning. But I have a few good and logical drs who I demanded they take the reins and help me steer the drs who are part of the revolving door at this time. It's very frustrating for patients who need knowledgeable and logical drs to help them with their symptoms.

What I'm trying to say is if your current drs aren't helping you and your health is worsening and they're not focussed on you, then get the hell away from them and try to find drs within a driveable distance to take your case. In emergencies and sudden bad flairs, you need drs at a hospital who can actually help you. You also need a few drs on your team who can get you on a treatment plan to maintain your condition and stay level headed enough to get you thru the rough times of flairs. Good drs come and go and are hard to find. So I pray you're healing and that by the grace of God you're led to good drs within driving distance who put your health and wellbeing first and are willing to do research and consult with other drs to benefit you. It's ok to have a dr who has never had a Behcets patient...that will be the majority of USA drs. And you have the right to discuss with them their knowledge and background on Behcets. When I get drs who tell me they've never treated a Behcets patient, my reply is this, "That's ok. That's why they call it medical practice. But here is my list of demands: Don't treat me like a guinea pig. Or a trophy to add to your medical resume. And don't be too proud to consult with more knowledgeable drs. Listen to me and treat me with respect and dignity. I won't fire you as my dr if you can do those things."

You're the one who has Behcet's and suffers woth this insidious disease. Don't lose your voice in demanding a dr to keep his/her hippocratic oath. Listen to your gut and don't stop fighting.