My BD Journey
Written by camille, published 4 months ago.
This is a quick overview of my journey toward a diagnosis. There is so much more to a person's BD story than what can be comfortably contained in a readable format. I don't want to be boring by rambling endlessly - just informative. If anyone has any questions, or would like more information/clarification about anything I say in the "story" below - please email me. I would love to hear from you!
Hello, my name is Camille. I'm a 45 year old woman who has suffered with Behcet's since childhood. Unfortunately, I wasn't diagnosed correctly until age 23 at Johns Hopkins University. My journey is similar to the testimonies of others who have already shared on this site. I was misdiagnosed several times, even spent one of life's most special moments - the birth of my first son - in complete and utter isolation in the hospital. Even the nurses didn't want to come into my room or change my sheets because they thought I had herpes. I cried many tears of humiliation during that ordeal. I have suffered mostly with oral and vaginal ulcers, some as large as a dime and extremely painful. I, too, have been poked, prodded, snipped and examined to the point of frustration. I, too, am easily exhausted after performing tasks that should be fairly easy for a woman of my age who is in decent physical condition.
My current medication regimen is: 5mg. prednisone (daily), 500 mg. naproxen - (2x daily, also known as Aleve), 50mg. Tramadol (2 tabs, 4x daily), Enbrel etanercept (50mg/ml injected 1x weekly), and Vicodin and Percocet as needed for pain when I "over-do" it...which doesn't take much, believe me!
Prenisone quells the inflammation, the Naproxen (Aleve) fights pain. The Tramadol also fights pain, but because it affects seratonin levels in the brain, it is a mood enhancer as well - which helps with the "down" feeling that I sometimes experience. The Enbrel is rather new. I've been taking it for about six months - and a new symptom that has surfaced is "all over pain" for which my doctor has now prescribed Lyrica, 50mg. (2x daily) which helps some. I can't help but wonder if the Enbrel is causing the "all over" pain - because I wasn't experiencing this prior to taking Enbrel. The Enbrel has, however, enabled me to drop my prednisone from 10mgs daily down to 5mgs (which was the purpose of introducing the Enbrel - to get the prednisone dosage down.)
One of the things I struggle with the most is lower back pain - which causes a lot of confusion about whether body pain (for instance, extreme morning stiffness) is being caused by Behcet's or by the presence of nerve damage from Degenerative Disc Disease, which I also suffer from.
I quit teaching full-time at a local high school in October of last year (2011) due to overwhelming stress and subsequent BD flares. In retrospect, I should have applied for long-term medical disability, but, at the time, I didn't feel that I was totally unable to work - just unable to work as a public school teacher. "No Child Left Behind" mandates piled onto an already stressful job just wasn't working for my health. Plus, my rheumatologist did not agree that I should quit teaching. When I brought it up at one of my office visits, his reply was, "If you quit teaching, what will you do with yourself all day?" Therefore, I was unsure whether I would qualify for Long Term Disability Benefits without his support. But I knew I couldn't continue on that path, physically, mentally or emotionally. The stress affected not only my physical well-being, but was starting to affect my marriage because I would come home and drop into bed exhausted, sleep through the weekends, and was falling behind on grading papers and planning for lessons. I knew I was headed for trouble and feared that my career would be permanently damaged if I didn't step down. Problem: No one could "see" my disease, my ulcers, or feel the utter exhaustion. I was starting to forget things, get mixed up - mental confusion. But, on the outside, I looked FINE!
There is a lack of understanding (and empathy) in society and in the medical field for those who suffer from BD. One testimonial on this site described one symptom as a "feeling of UNEASE". I found that interesting - because that description is spot on. When a patient describes the physical attributes of BD, it's not difficult to be perceived as a hypochondriac, or simply being "lazy". I remember one time having a loud argument on the phone with a short term disability coordinator - finally ending with me asking him if he wanted to see the large ulcer on my vagina because he argued that he could not approve my benefits without a more detailed diagnosis of "what Behcet's IS". The symptoms are many and practitioners and other workers in the medical field who understand Behcet's are few. It seems that the only ones eager to listen, research and "understand" Behcet's Disease are the life insurance companies. They're happy to deem us as UNinsurable. Go figure!
I hope that as more people are accurately diagnosed, those responsible for our care (doctors, disability workers, drug companies, etc.) will become more educated and realize that Behcet's is truly a serious illness.
Written by camille, published 4 months ago.
13 comments for «My BD Journey»
[ Expand all ]
Camille, I sort of know what you are going through and I say that because so far I have not had such serious suffering or medication side effects. I a male 59 yrs of age, doing some exercise on a daily basis; if you can still swing that, despite the lower back pain you cite I would recommend it.
Have you tried colchicine? It works for me at time though not always.
Take care, keep up the spirit.
Jaime Marenco jaime_marenco@yahoo.com
interesting that you decided to end your career because it was affecting your marraige. My marraige did not survive my illness, and neither has my career.
I am still able to parent my 10 year old most of the time (I need more sleep than she, so on the weekends she is on her own in the mornings). I am almost 49. Diagnosed myself in April of this year. Take Remicade, methotrexate, prednisone, lortab but still am very ill.
Just a quck comment ..... going down on Prednisone ALWAYS hurts my bones, joints, muscles, well basically my body, ALL over . . . . . So, duromg the little time insurance covered Humira for me, I was considerably better in the 'Behcets Department' . . But I did still suffer with Prednisone tapering.
I'd reccomend (tho not a Dr.) that you hang in there until u are done w/ the prednisone for, I dunno, a good month!! :-)
I wish you the best!! God-Bless
Sincerely
BD patient, CA, USA
I too was diagnosed with Behcet's disease a few months ago, but for years that I've suffered from various diseases that the rheumatologist told me were related to the disease. I suffered various humiliations when I was considered to be a hypochondriac, but the clinical examinations at the end found various diseases. For two years I've had severe inflammation of the mouth and eyes, I suffer from chronic bronchitis and I follow an oxygen therapy for dyspnea on exertion, I have problems of mild cardiac arrhythmia, several disc protrusions in the column, and neuropathy in my legs. My immune defenses are down and I've always had heavy infections. Now I follow a cure with Reumaflex (Methotrexate) 15mg and at least the terrible pain that I had my legs and back are better, I also suffer from a great weariness. I hope they find a cure for this disease.
this last comment has not been made into english yet/ looks like a person dx with behcet due to labs run by a rhumatologist this person suffers from being called hypochondriac, after suffering from inflammation of eye, bronchitis causing dyspnea, heart problems, varicosities, and neurological symptoms. she tried interferon, methotrexate. dont get any of the rest. I will check back to see how badly i did
I was diagnosed with Behcet's disease clinic at the University of Padova (Italy) from a few months, but from years I suffered various diseases and the rheumatologist told me is related to Behcet's disease. From two years I have severe inflammation of the mouth and eyes, I suffer from chronic bronchitis in oxygen for dyspnea on exertion, I have problems of mild cardiac arrhythmia, several disc protrusions in the column and neuropathy in the legs. My immunitare defenses are down and I always had heavy infections. Now I must do a weekly injection with Reumaflex (Methotrexate) 15mg and at least with regard to the terrible pain that I had the legs and now I'm better. I also suffer from a great weariness. I hope physicians find a cure for this disease of Behcet.
Camille, in reading your story, I was reliving my daughter's story. At 20, she is feeling like she'll never be able to really do anything. Her work hours have been cut down to 10 hours a week and she attends college classes 2 days per week normally. But, recently she has had two bouts with outbreaks which has kept her home from work completely and missing most of her classes. The school has threatened to drop her due to missed days, but I told her to go back there and tell them that I don't care if they fail her, she is not dropping the classes. Meg is an art student, her passion. This is the only way I can seem to give her something to live for. Most of her friends have backed off and even some of the family is thinking she is nuts because they can't see the problems, to some degree this includes my husband.
I try to get her to talk to people (counselors, etc.) but she wants no part of it. So I try to be the one she can talk to and advocate for her with drs, teachers, sibblings and friends. Thanks for listening.
Thank you EVERYONE for your responses to my story - I receive great comfort in knowing that I am NOT ALONE on this journey. Yes, <jaimemarenco>, I have tried Colchicine as well (to no avail), but I understand that sometimes drugs DO and DO NOT work. For instance, I tried Enbrel ten years ago and didn't feel any response, But, this time, it has enabled me to drop my Prednisone intake significantly. I agree that exercise will help and I need to force myself to do it. It hurts to get moving, but once I do - it feels wonderful!
Also, <megsmom>, I was academically dismissed from Towson State University, where I was an art major (like your daughter) when I was 21. Isn't that ironic? I later took it to the board of directors with a note from my rheumatologist and was completely reinstated. BTW, it's okay that your daughter doesn't want to discuss her malady with strangers. I didn't either at that age - but thank God my Mom was like you. She was my advocate - and I wouldn't be where I am now without her hard work and persistence. It is SHE who discovered ABDA!
Thank you <sslaird> for your help with translating -- why let language keep BD sufferers from staying connected? : )
Last word, I hope that anyone who THINKS they have BD gets under the care of a BD-experienced rheumatologist asap! This disease is no joke! It can kill. I remember when I first moved back into this area, and I called a rheumatologist to schedule an initial appointment. The woman who answered the phone said, "Honey, there is NO WAY you have Behcet's Disease. If you did, somebody would be conducting a study on you!" I hung up and moved on. Obviously, that was NOT the doctor for me. Interview your caregiver as if you are hiring him or her to work for you - because, in essence, YOU ARE! If you have BD, it's vital to have your eyes thoroughly examined and have blood work checked periodically. Not a "do-it-yourself" kind of disease here! Take care of yourselves. Be proactive.
Hugs to all...
Camille
I understand how you feel. If you don't look sick the doctors don't think you are sick. I was a Pharmaceutical Sales Rep and had to go on long-term disability because of panuveitis, migraines, fatigue and muscle weakness. Its hard to get people to understand you don't feel good when they think you look fine. I just recently started having headaches all the time, pain in my left ear and constant joint pain and the doctors say I'm depressed and I should get out and walk. Tried and walking caused more pain been down for a week thanks to the walk.
As a person with Behcets I'm not sure what I would rather hear sometimes. Gosh you look great or holy cow you look awful. I'm trying to work full time not really an option to not work as I'm a single woman ( I have 5 grown children and 2 amazing grandsons). My marriage didn't last my illness nor has any of the relationships that followed. People don't understand what they can't see the fatigue associated with Behcets is at times overwhelming I'm in the hospital right now for a tuneup I like to call it. I feel badly for meg and her mom. Although I had symptoms in my 20's I think having it diagnosed would have scared to death. I was on a med called cellcept for 4 years with colchicine I did really well until my stomach issues started and it appeared I was not absorbing meds by mouth. Steroids continue to be my lifeline but hopefully someday I will need them less
Hello Camille, my name is Codi and I also have Behcet's. I wanted to comment on the fact that you take naproxen(aleve) for pain. I recently discovered on my own that naproxen triggers a flare up for me (mouth and genital ulcers). I was just wondering if you or anyone reading has ever noticed such effects.
i cannot take naproxen either. I recenly dropped methotrexate because it was causing such bad headaches. Added colchicine, but had a bad flare (close to ending up in hospital) without the methotrexate. Colchicine was doubled to 4 pills a day, but haven't noticed much improvement. Thank god for remicade; haven't been in he hospital since I began taking it. Also have been able to cut back on prednisone, from 60 to 15 mg per day. Feel like I am looking for that one medication that will fill in to allow me to drop the prednisone lower and keep me well between infusions.
Hello Veronica, Merry, SSlaird and Codi. Thank you for your responses!
Codi, I have not noticed any effects linked directly with Naproxen. I fell off of a horse in 2006, which damaged my L5/S1 in my lower back. Because of THAT I take Tramadol (2 pills 2x per day) along with the Naproxen (2x per day). Those meds are unrelated to my Behcet's. I have been taking them for years - so, if I were going to suffer an effect I probably would have noticed it by now. One thing that has been REALLY been bothering me, though, for the last 2-3 years are SPLITTING FINGERTIPS. They hurt as bad (if not worse) than oral/genital ulcers. They make it difficult to function! Taking prednisone and Enbrel injections make everything seem like it takes FOREVER to heal! I tried putting coal tar ointment and wearing gloves at night and that does seem to be helping. I refuse to go back up on the prednisone (down to 5mg per day now.) Does anyone else suffer with finger issues???