Behçet’s Syndrome Community

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***URGENT***Does anybody else take Methotrexate shots?

If, so PLEASE let me know if you have any symptoms from it?

Yes, I've been taking methotrexate injections for about 1 year and the only side effect I have is fatigue but after talking to my doctor instead of taking injections 1 time a week, I take injections 2 times a week and it's not as bad as that!

Thank You, latornade and Julia !

robpleticha
moderator

Hey Jonnie,

You should talk to your doctor about any further symptoms or side effects caused by the treatment. Can you give them a call?

I saw you are in the USA. You can report side effects to the FDA there:
http://www.fda.gov/Safety/MedWatch/HowToRe...

How are you feeling now?

Gastroenterologist in Los Angeles or Southern California

Can anyone recommend a gastroenterologist in the Los Angeles area that has experience with Behcet's? I am helping a friend that has Behcet's. She is not receiving good care and is very ill. Any help is greatly appreciated.

What kind of insurance does she have? I'm in Southern California too and my Husband is a Physician for Kaiser. He could certain ask around for her if she has Kaiser???

Thank you for your reply! And than you for your offer! Unfortunately, my friend doesn't have Kaiser. She has Blue Shield PPO.

Please help find a doctor who understands Bechet's

Greetings. I am the loving sister of a person living with Behcet's syndrome. My big brother has been suffering from this disease for most of his life. Doctor after doctor has misdiagnosed and attempted to treat him for things he doesn't have. Finally, a friend who is a general MD, diagnosed him with Bechet's. It all started to make sense. The mouth ulcers are unbearable and by the hundreds. They cover the inside of his mouth and tongue and go down his throat. The episodes are happening more frequent and more severe than when he was younger. He has trouble swallowing and when he is admitted to the hospital the only thing they can do is treat him with morphine.

Besides the complications from this disease, he is struggling to find a doctor that knows anything about it and can offer some viable treatment options. We NEED to find a doctor that understands this disease and can help to treat him. Live in Florida, but will travel ANYWHERE.

robpleticha
moderator

Hey Kitty,

Thanks for writing here. ABDA has a Doctor Directory, but I don't know if there is anyone there for Florida. Maybe try putting in your zip code?
http://www.behcets.com/site/c.8oIJJRPsGcIS...

If nothing coming up there, contact ABDA.

Thanks,
Rob

Find a rheumatologist that has some familiarity with BA. In Reno, there is an eye specialist that has diagnosed at least 3 people. My rheumy is not familiar with the disease, but was willing to help me through specialist at UCLA and CAL Berkley. Remicade has made a huge difference for me. I've been on it for 2 1/2 years and have not had more than 1-2 ulcers at a time right before a treatment. Before I was diagnosed and treated my entire body felt like it was shutting down and I was dying. There is a way to get financial aid for Remicade, if he is not on medicaid or medicare.

Raynaud's phenomenon

Is Raynaud's phenomenon a problem for any members? I've read some accounts from articles and feedback from patients that report raynaud's phenomenon with behcet's disease, but it isn't commonly reported in the main literature.

I have it and it affects me very badly at times, especially during periods of heavy physical or mental stress.

Back pain and Behcet's

Does anyone else experience crippling lower back pain with Behcet's? I will have my second full dose Remicade infusion next week. I have heard good things about Remicade. Has it helped decrease back pain for others? I hurt so bad I take Zofran so I do not throw up. I am trying to stay away from narcotics. Has Remicade helped patients w/back pain?

Hello!
Nice to meet you!
I have Major Chronic pain in my lower back and hips since I have been diagnosed. I have to take multiple narcotics to help me.If not, I wouldn't be able to get up or move around. I am taking a Methotrexate shot once a week for my Behcets. Methotrexate is for the same thing as Remicade but it DOES NOT help with my back pain at ALL. I wished it did! I I take Zofran, Lortab 10s, Flexiril, and many more meds.

I am posting this in hopes that maybe it will help you little more ...

"The most common side effects of Remicade are respiratory infections (such as bronchitis, sinus infections, cold, sore throat, coughing, nausea, stomach pain, upset stomach, back pain, diarrhea, headache, dizziness, tiredness, itchiness and urinary tract infections."

"The most common reasons that patients have stopped treatment are shortness of breath, rash and headache. As described above, sometimes these side effects can be serious and may require other treatment."

http://www.gimedicine.com/Joomla/index.php...

Yes I have back pain if I have one of my Behcet food triggers. And used to have it for days/weeks at a time. I found that going for a long walk often made the pain go away.

Hello, my name is Mindy. I've been on Remicade before (about 6 months ago) and I found I did help with BD pain and other symptoms, like mouth and genital ulcers, neck and head pain etc...
However, I had to stop for now because I was getting horrible kidney infections from the Remicade infusions. But I'm so very hopeful it works out for you!!! You'll be in my thoughts and prayers!! Xoxo

Feeling dizzy / lightheaded / out of it / shortness of breath before flare up?

Anyone notice these signs before a flare? I don't know if it's just me or not, but reflecting back before some of my flares, I feel a bit woozy, really weak feeling. It's hard to explain the sensation, but it's similar to having low blood sugar or something like that (but it's a different feeling). It's like a sign it's coming on.

Hello!
Nice to meet you!
Yes, I too, have those same feelings and signs when start having flare ups. I get to feeling so weak and exhausted, lose my appetite completely, get "rubber legged" to where I sometimes just collapse to the floor or ground. I start giving out of breath faster and gt of balance and dizzy. My eyes also seem like they get a little cloudy during a flare up.

Yes to the eye cloudiness! I notice that also. Headaches are also a frequent manifestation, actually more like a whole bodyache. I feel so "raw", bleh.

I had cloudy vision for about 6 months solid. No one could find anything wrong with my eyes. I had been married fairly recently and we were saving money by eating a vegetarian diet. Twenty years later I discovered my main triggers were egg, milk and gluten - which were the backbone of our diet at that time.

aiuto....

ciao a tutti.... avrei bisogno di capire.... ma purtroppo i medici non sono molto disponibili... qualche mese fa il mio medico curante, dopo anni di continue novità nel mio stato di salute, mi ha riferito che potrei avere la Behcet... un secondo medico mi ha detto lo stesso.... oggi sono andata da un dottore convinta di avere una risposta ma non l'ho ricevuta. io però non ce la faccio più.. lui non mi ha voluto neanche ascoltare.. avrei voluto dirgli tutto quello che ho passato in questi anni..ma a lui non interessava. mi ha segnato cortisone e immunosoppressori e mi ha mandato via...ha detto probabilmente non è behcet ma non è da escludere. io non so cosa fare.vorrei solo stare meglio. un abbraccio a tutti.

Devi aver sofferto tanto. e con una famiglia da mandare avanti immagino deve essere stato più difficile io non so dove trovare le forze x me stessa figuriamoci x la famiglia.spesso mi sento fortunata per questo. anche se poi penso al mio futuro e mi vedo sol però almeno non farò soffrire nessuno nei miei momenti no. per fortuna la patente l'io presa. il dottore mi ha voluto bene e mi ha fatto promettere di guidare poco e di giorno. almeno riuscirò a lavorare un altro po'. e poi mi impegnerò a cercare un Po di calma e tranquillità. un forte abbraccio . a presto

We all understand and will cheer you on. An important thing to remember when you feel very overwhelmed by work health or relationships, "this too shall pass". That's when it's time to step back, take that calming breath and shake the stress loose. Live moment to moment, deal with one thing at a time until you find your balance again. Time doesn't stop, life doesn't stop for anyone or anything. The hardest part of being chronically I'll and my handle on the bad things was accepting that I could not control them. They will happen, there would be ups, downs and loss. My job was educating myself the best I could, not taking everything at face value until I felt sure of myself. Life changes so fast, what has happened in the past is done, no use wasting precious energy to circling the negative past. Let it go, water rolling off your body, move on to living. It allows you to better problem solve. To be able to be more calm. It's hard to do. Very hard and some never manage to get there. Growing old is a blessing in that respect. Seeing that time is not really very important. Your family, friends and day to day living are. I like thinking back at good memories. I set back and make new ones of the now. I greet my cats, say hello to family as they rush by. I push out the worries of the day or what I know will be negative issues. I just feel the good quiet around me. I know one day I will pass. Everything does but my journey through it left good memories that touched others.

Yes I always hurt. I have to change how I live, find medication to assist me. I am not the norm but so what. I had to step out of main stream to slow down. I couldn't keep up so I quit trying. Found my own pace I could live. I lost friends, family that are hardly sick and do not understand my illness. But I have new friends and concentrate on what I can do. I'm always broke but there is some assistance out there from kind people, organizations and even government agencies. I don't like it, I miss working and sometimes feel shut in. I am not normal and I have to live with it.

You can do it, just don't let it drag you down for too long.

ciao,
scusa se non ti ho più risposto. mi hai scritto delle cose bellissime e ti ringrazio tanto.
mi piacerebbe conoscerti e stringerti forte. devi essere una persona speciale.
come vanno le cose? come stai?
un abbraccio forte forte con affetto.