Communauté La maladie de Behçet

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Behçet's Disease

Hi everyone, my name is Francesco and I'm from Naples (Italy) ... I'm suffering Behçet for 4 years!! the first symptoms were terrifying, I brought the perforation of the stomach and intestinal ulcers! later on my body was a severe form of hives accompanied by bone pain .... for about a year I make use of immunosuppressants, and apparently I'm literally better, I can play back functions that performed before ... ....

robpleticha
modérateur

Hi Francesco,

Are you still taking immunosupressants?

Happy to hear you are feeling better.

Have you heard about the Italian Behcet's patient group?
http://www.behcet.it/

THANKS FOR LETTING ME RESPOND, SHARE THIS PROBLEM WITH OTHER PEOPLE IN THE WORLD MAKES ME FEEL BETTER. YOU'VE HEARD OF THE ASSOCIATION SIMBA IN FACT I'M TRYING TO GET IN TOUCH

7 Years of Symptoms

With a complicated family medical history, and a complicated personal medical history, it took some time before I finally got answers.

Around the age of 20 I started to feel relatively crummy. I had undergone some devastating personal experiences, and for a while I was stuck with the label of psychosomatic stamped firmly on my symptoms. Even when I had a string of seizures, my doctors remained fixated on my mental health. I had, and still have, PTSD. It's a condition that many doctors tend to focus on as the answer to symptoms that don't seem to have an other cause.

One neurologist evaluated my EEG, and stated that I had epilepsy. However, I after becoming very ill on the medications used to treat the seizures, I decided I wanted a second opinion. I was still having jerking movements that they were calling myoclonic seizures. I spent a week at Yale hospital, and they were able to determine that I did not have a seizure disorder. My jerks were actually a mild case of Tourette's syndrome. The neurologist there believed that I was likely having seizures due to dehydration, exacerbated by drinking. I gave up alcohol, and was seizure free until a road trip a few years later where I not only didn't drink enough water, but was sleep deprived as well.

During this time I had begun to have serious abdominal issues. I had severe acid reflux, to the point where bile would shoot from my mouth as if I were a baby spitting up. I was even having bile acid diarrhea. I was hospitalized twice due to dehydration. Once I actually lost consciousness in my shower. Pulled the curtain down, woke up on the floor, it was bad. In the ER I was diagnosed with severe ketoacidosis, despite not begin diabetic. My admitting physician was awful. Despite my pain and history of bile problems, he refused to assess my gallbladder. I was given an endoscopy and colonoscopy, both of which showed extensive inflammation. His diagnosis? I was anorexic and bulimic and the weight loss, and inflammation, was a result of my refusing to eat, and purging.

I was deflated. I was neither anorexic nor bulimic. My gastroenterologist suggested I take medication to gain weight, but I refused. I didn't want a pill to put on weight, I wanted to enjoy food again. During this time I had begun to get more oral ulcers than ever before. It's something I've struggled with since I was a child, but they had begun to get larger and more numerous. I actually ended up in the ER due to several oral ulcers, some as big as a quarter, causing my whole face and neck to swell. I was also suffering from joint pain, extreme fatigue, and sensitivity to light.

I got a new gastroenterologist, who also doubted I had a gallbladder issue. I didn't have stones, and I wasn't over 40, or overweight, which are some major risk factors. Still, he ordered a scan, and was shocked to find out that my gallbladder was below 20% function. I had it removed, and for a brief period of time my stomach improved. My fatigue lingered, as did my joint pain.

My first rheumatology appointment came at age 21. I explained that my father, aunt, and grandmother all have lupus. My dad and aunt have it severely, my grandmother just mild symptoms. My other aunts have rheumatoid arthritis, and one psoriasis. The uncles have autoimmune thyroid disorders. Basically nobody in my family has a functional immune system. Despite normal blood work, my rheumatologist felt I could have lupus. My rheumatoid factor was slightly elevated, but not enough to diagnose me with arthritis. I was put on a low dose of Plaquenil.

I did well on the Plaquenil for a few years. The biggest change was in my fatigue. I still required more sleep than the average person, but I was no longer requiring 14+ hours to function. The joint pain remained, as did the oral ulcers. The nausea and stomach issues slowly returned. I had intermittent struggles with skin conditions that my dermatologist couldn't quite diagnose. My face broke out in a brutal rash that looked like a combination of acne and rosacea, but wasn't either. It responded wonderfully to topical steroids.

I bounced around for several years. I saw neurologists for issues with balance and blinding headaches that were initially deemed to be migraines, but later just labeled "vascular" headaches. Dermatologists were perplexed by my combination of obvious skin conditions, psoriasis on my elbows, head, and in my nails, eczema on my eyelids. My gastroenterologist remained confused by my abdominal pain and nausea. I gave up gluten which helped with my abdominal dissension, but didn't stop the nausea and pain. An MRA showed that my celiac artery was severely narrowed, but the cause of the narrowing wasn't apparent. I started getting kidney infections, and spontaneously having blood show up on routine urinalysis tests.

Through it all, I insisted there had to be an answer. I started looking into ANA negative lupus. With my family history, it seemed to make the most sense. I understood lupus, and it felt like something I could handle. For a while they thought psoriatic arthritis might be in play, but x-rays didn't support the diagnosis. Frustrated I input all my symptoms into a search, and Behcet's came out. I'm not of the usual ethnicity for the disorder, and it's so rare, that I felt silly even considering it. I didn't bring it up to my doctor, though I did tell my husband, and he felt like it fit my symptoms. During one of my kidney infections, I reacted badly to the antibiotics. I was diagnosed with Steven Johnson's Syndrome when I visited my gynecologist for a lingering sore after all of the sloughed skin had been healed.

I started to take photos of everything (except that genital sore) and saved them in an album on my phone. During a follow-up appointment with my rheumatologist I pressed for a diagnosis. He asked me to explain my oral ulcers, so I showed him a picture. I also showed him my bruised legs, and the photos of my facial rash. A smile crept onto his face, and he asked me if I had ever heard of Behcet's. I told him I had, but that I wasn't very familiar with what it was, and he admitted he wasn't either. Still, he felt it made the most sense. He prescribed me methotrexate, which I was worried about because of my extensive GI symptoms. When I mentioned my blocked artery, his smile widened. Celiac artery stenosis isn't common, but vasculitis (like with Behcet's) can cause the artery to swell and narrow.

I opted not to take the methotrexate for personal reasons. When you struggle with severe nausea on a daily basis, taking something that's almost guaranteed to make you puke is a terrible option. He told me that I should take a short course of steroids, 5 days, if oral ulcers began to arise. I did, and they stopped growing and went away within a few days. Normally I struggle for a few weeks.

At a follow up visit he began referring to "my Behcet's," which makes me believe this is my officially diagnosis. I talked with my general practitioner, who is also my GI doc, and she agreed that Behcet's made sense. She also said that ulcerations in my GI tract would explain my intermittent mild GI bleeds and abdominal pain.

So, at 27, I have been formally diagnosed with Behcet's. Other autoimmune conditions aren't entirely ruled out, as I could still develop issues like my family. I know that lupus is still possible, but I also have hope that maybe it's just Behcet's and nothing else. I have had several bouts of severe sensitivity to light, my eyes burn and water, and get redder than I ever thought possible. Despite that, my eye exams have all been normal thus far, though I've only gone in for floaters and not during a flare. I'm currently waiting on insurance approval to start Actemra, an injectable medication. It would be best for me to do something injectable because of my severe nausea.

I'm not sure what the future will bring, but I am thankful to have a diagnosis. Of course, it's frustrating because not many people have heard of Behcet's. My husband just tells friends I can't come out when I'm flaring because I have lupus. It's easier I guess. Right now I'm dealing with weight gain, hair loss, and severe dry skin around my eyes, so they're checking my thyroid to be sure nothing is going wrong with it. I'm not overweight, but I have gained weight in a short period of time, so it's on the table.

It was also nice to be able to look my doctor in the eye and say it's not herpes. I only have a few genital sores, but they were convinced that's what it was. Blood tests were negative for BOTH forms of herpes. I just want to start the Actemra and feel better so I can feel better and half a life again. I work part time, go to school full time, and sleep the rest of the time!

robpleticha
modérateur

Hi,

Really good idea to take photos during flares like you did.

Glad you got a tenative diagnosis at least and I hope that progresses into a good treatment plan.

Have you looked into the American Behcet's Disease Association? They offer some good resources and services:
http://www.behcets.com/

Thanks for writing.

J'ai été sur ce site, et il y a clairement de bonnes informations! Je pense que je refuse toujours d'accepter. J'ai passé de nombreuses années avec des diagnostiques incomplets et je veux être sur du diagnostic de Behcet. En plus, il y a le fait que pendant si longtemps, on m'a dit que c'était tout dans la tete, même si j'avais des symptômes physiques évidents comme des aphtes.

Une chose difficile est que l'assurance autorise ce traitement. Puisque la plus des médicaments utilisés pour Behcet doivent être utilisés pour des raisons spécifiques, mon docteur doit se battre avec ma compagnie d'assurance et prouver que c'est médicalement nécessaire.

First, sorry to hear about all of your pain and debilitating experiences. My history is milder but I know how much these issues can affect ones life. I have spent the last five years dealing with my constellation of symptoms and it has challenged my marriage with a wonderful women, left my academic career tattered and forced me out of work for 4-6 weeks at a time. I hope your husband continues to support you in the loving way that you need (we are lucky to have thoughtful spouses).

Second, I hope your insurance and medical team continue to progress in the right direction. My personal insurance has been great but I have had mixed luck with caring, thoughtful doctors; they just seem to be rare. I sincerely hope they find you a treatment regime that reduces your pain and alleviates your symptoms. I know all too well how it feels to want to get back to a routine that existed before these outbreaks.

My GP labeled my mouth ulcers herpes without even looking at them. I knew the literature and my body well enough to know they weren't. But more to your point, it is an immense relief to not have the stigma (which is unnecessary but common) associated with HSV. I wish more doctors would take the time to study our personal symptoms instead of labeling us without the correct information. Being a patient is hard enough as it is.

I hope your recovery continues in the right direction. I appreciate you sharing your experience and hope this forum provides us both with a thoughtful community to share and heal a bit.

Take Care,

Phillip

robpleticha
modérateur

Enbrel shortage in EU late this summer, check with your doctor

The European Medicines Agency reports that Pfizer has warned of a possible shortage of Enbrel in some member states later this year.

http://www.ema.europa.eu/docs/en_GB/docume...

I know some people living with Behcet's take Enbrel, so I thought I would mention this. There is no need for alarm, but you might want to share this with your doctor.

martacampabadal
modérateur

Inflammation Survey

Even if this subject doesn't apply to you, would you please respond so that I have a balance of everyone.

Some of us have wondered about the possibility of inflammatory disease being related to things like autism spectrum disorder, ADHD, GI issues, POTS, etc. I have the attention of a geneticist who has shown a lot of interest in possible correlations between inflammation and these other symptoms. I would like to share the results of this survey with him. I think we have a rare opportunity with this group since we have many different diseases, but they are all linked by inflammation. This is a simple way to poll a large number of people to see what the prevalence of these other symptoms are and how they change with inflammation fluctuations.

I want to emphasize a couple of things:
1) This survey will not collect names, e-mail addresses or anything else that can identify you. It is completely anonymous. Please only share what you feel comfortable with.
2) I cannot promise that this will lead to anything. I would just like to give the information to this geneticist in the hopes that it prods some thought/research in this subject, which could help all of us greatly.

You can repeat the survey for more than one person, since many of us have multiple family members affected.

Thanks so much for doing this! I really hope we can get some interest in this specific subject with a researcher.

Follow this link to participate in the survey:
https://www.surveymonkey.com/s/RMLGQGJ

Need Advice: Rheumatologist

We got a referral that fast tracked us with a highly recommended rheumatologist in a university medical hospital. He specializes in Vasculitis and has had several patients with Behcets. We are very excited to move forward.

Unfortunately he is not a covered Provider for our insurance. I nominated him and he does not meet there undisclosed criteria. So we are stuck in a difficult conundrum. Either we pay for 50% of all our visits with him (after we meet our deductible which is luckily fast approaching a reality) or we see someone for less $ but who has no speciality in this disease's affects and has no experience with the disease.

Do folks have any recommendations? I am hesitant to see a regional doctor that is covered as we live in a region with a small population that just doesn't provide the doctors with a background that helps. I have also had several negative experiences with regional specialists as they seem to lack any sense of patient care. It seems prudent to me to try to work with a high quality specialist until we get a treatment that works. That said, this disease is quickly having a huge affect on us financially. I am out of work for now and we are racking up the bills because of the imaging costs (previous vision loss and major headaches).

Would love some advice from people who have worked with doctors for a while to treat Behcets.

Phillip

richard1
modérateur

Hi Restrac

I have had Behcets since 1995 and live in the UK so I cannot give you much advice about your health care system. I would ask someone at ABDA which is the American Behcets Disease Association.

The best advice I was given when I first had the illness was to find a Doctor that knew about it or had other patients with the illness. This is a very rare and very complex illness that crosses many fields of medicine and depending on how lucky or unlucky you are sometimes that means you have to see many specialists. I think I would always opt for the Doctor with experience of the disease over another Doctor who has little or no knowledge of it.

Can you hedge your bets and afford one trip with the Doctor that has some knowledge and other patients and see if you feel comfortable with him and confident in what he says and does for you.

Even with a really good Doctor this disease is sometimes like being on a rollercoaster and what medication works for one patient doesn't work for another. There are some free information about headaches with Behcets and other symptoms that you can read up on.

Please see these below

http://behcets.org.uk/information-for-pati...

This the UK website for Behcet's patients for information.

I would encourage you to read up on the disease. If you don't feel well then don't keep quiet. Tell them that you feel ill. List all you symptoms and take the list with you when you see the Doctor. It is easy to forget things when you are in front of the Doctor. Keep a weekly chart of your symptoms and difficulties. Don't be embarrassed to ask anything of the Doctor.

I hope this helps

Please come back and tell us what you decided and what happens to you. We can all learn from one another. Good luck on your journey.

Regards

Insurance Problems

Thankful for free healthcare, except I couldn't actually GET healthcare.

So, my husband is in the military, and as a result I have military insurance. This insurance (in theory) allows me to see all of my doctors for free. It also (in theory) covers my prescriptions 100%. What I found out, is that the free version of my healthcare as pretty much pointless!

For starters, I was constantly having my specialty referrals rerouted to the military hospital. However, the military hospital would frequently have a 2 month wait for appointments. This was following the 2-4 weeks it took to have the referral put in and processed. I would occasionally get lucky and be referred to a civilian provider, however, my insurance reserved the right to reroute me back to the military hospital...which they did regularly. I had no continuity of care, and I was miserable.

The breaking point was recent. I deal with repeated kidney infections, most of which pop up without any bladder infection symptoms. After having 5 infections in 6 months, I was referred to urology. I saw a phenomenal civilian doctor who recommended high dose vitamin C at bedtime. I went several months without incident, then in December the 6th infection in 10 months reared it's ugly head. I called but was unable to be seen as my referral had been dropped. I called my primary care doctor who promptly sent me to the ER. She placed a referral back into urology, which was routed to the military facility. They didn't have any openings for 3 months, so I set up an appointment. Then in February I got another infection. I called, but there was not way to be seen sooner. I was told to go to the ER. The next day I called my insurance provider and learned I had a catastrophic cap of $1000 annually IF I opted for the copay version of my insurance. No referrals were needed, and I could see any specialist I wanted.

The only roadblock I face is approval for my medications. Due to major digestive issues, I have a hard time remaining compliant with oral medications. As a result, my rheumatologist suggested Actermra, a subcutaneous injectable. Of course, Behcet's is uncommon, and the drug would have to be used off-label. I can almost hear the conversation that took place at my insurance authorization office, "He wants her on what? For what? What does that even mean?!?!"

Right now I'm on a low dose of Plaquenil, and a host of digestive and sleep medications. I'll likely be goign back on Celebrex for my achy joints, something I had hoped the Actemra would resolve. I'm also facing a doubling of my Plauquenil, which sucks because that stuff can do major damage to my GI tract. I end up taking one drug for the main problem, a second for the side effects, a third for the side effects from the second, and so on and so forth. It took 3 years of misery before I found a doctor willing to give me Zofran, and seriously, I hope she knows how amazing I think she is. It took some fighting with my insurance though, as they initially only approved me for 30 tablets every 30 days...despite instructions to take it more often!

Currently I'm waiting on procedure referrals (still need those despite not needing referrals for doctors). I need an MRI of my entire abdomen, and an MRA to assess the narrowing in my celiac artery. A prior MRA of my kidneys had randomly shown high grade stenosis of my celiac artery, which my doctor feels could be causing my abdominal pain and nausea. If the MRA shows the same amount of narrowing, or less, I'm going to need an endoscopy and colonoscopy. Actually, I'll need those regardless, but I can put them off for a bit if the MRA results indicate my issue is primarily arterial.

The kicker is...I'll still need the endoscopy and colonoscopy, and then I'll have to see a vascular surgeon to determine if/what can be done for that pesky artery. I should hit the $1000 cap relatively fast...

Salut

C'est tout nouveau pour moi ... je présente les symptômes aussi longtemps que je me souvienne. Enfant, nous utilisions les ulcères de la bouche comme une jauge pour s'assurer que je suis malade .. 'ça y est! Sabrina va encore tomber malade, rince tout simplement la bouche avec de l'eau salée ma puce, tout ira bien.'

On m'a dit que je souffre de dépression. Oui, ça s'appelle tomber malade d'être malade .. Enfant, j'ai appris que j'avais une méningite .

J'ai eu 5 thromboses dans mon poumon droit 1 dans le gauche . "Aucune raison trouvée à l'époque." J'ai des douleurs dans mes jambes, les pieds, les genoux, le dos, les doigts .. Et ainsi de suite ... J'ai deux types d'ulcères (comme c'était embarrassant quand j'étais une adolescente) douleur de ventre. J'ai les yeux flous et très douloureux et ils s'aggravent j'ai peur à ce sujet mais je ne suis pas allée les faire vérifier . . on m'a dit que j'ai l'IBS et les kystes sur mes ovaires.

Ensuite, ils m'ont mise sur 'lengout' .. c'est nulle ... J'ai la barre dans mon bras pour arrêter la grossesse, mais je pense que depuis qu'ils l'ont mise tout a empiré .. Quelqu'un sait-il quelque chose sur cet aspect des choses ?

Mon enfant de 10 ans vient d'être diagnostiqué avec des TRAPS .. et je pense que celui de 17 ans en a parfois aussi ...

Je rentre chez le docteur le mois prochain.

Note: Ce contenu a été traduit automatiquement par un service tiers.

Bonjour! Tout ça est complètement nouveau pour moi et je me demande où vous discutez de votre profil. Dites-nous ce que c'est exactement. Quand je suis devenue membre, j'ai commencé à naviguer à travers tellement de sujets et quoique j'avais la plupart de ces problèmes, le plus grand, je n'ai pas pu le trouver sur aucune discussion. Wow, vos jambes sur la photo! très similaires aux miennes quand elles se dilatent, mais les miennes deviennent énormes, avec des oedèmes prenant le godet et les taches de couleur colombin, presque ayant un soupçon de noir et je les regarde comme si elles sont mortent et retombent .... peut-être que je devrais emporter des béquilles avec moi, juste au cas où! lol! non, mais c'est tellement douloureux et y être de temps à autre pendant 2ans. J'ai un lupus systémique et un Raynaud ... également beaucoup d'autres problèmes charmants qui vont avec, bien sûr. Mes jambes, les chevilles et les pieds sont nouveaux (encore une fois, 2ans) parce que j'ai eu le lupus et le Raynaud depuis 1985. J'ai d'autres affections qui ont également des symptômes similaires, qui proviennent du lupus, c'est si confus. De toute façon, comme il ya aumoins 6 des problèmes ici, sur ce site, je me bats depuis des années et d'autres qui n'ont pas été régulièrs, donc je ne compte pas ceux-là! .... en plus maintenant, les jambes, les pieds ... je rejoins la partie ! s'il vous plaît prêtez-moi toutes les informations que vous avez!