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Advice:
Medicine and treatment for Behcets
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I have read several posts and answered as much as I could. I wondered how each one of you who have posted found your DX? What was your first symptom.

Secondly. how many of you read on your disease and know if you have Neuro-Behcets? If you do have Neuro-Behcets do you know it can be dangerous untreated? One of our Arizona Behcets woman died last month. This was heart breaking but she isolated herself and had A LOT of stress. Her husband told her he was having an affair a week before she died. He did not believe there was such a thing as Behcets. She had an aneurysm and died suddenly. She was a mother of 6 children and one of them found her.

Please remember some of the medicines cause moodiness or worse side effects. I highly recommend not to isolate ourselves from others as they can see changes when we do not..

What state and country do all of you live in and do you have a local support group? We started one in Arizona and it is just where we meet for lunch every other month and share what is going on and information about medical care here and treatment plans here compared to other parts of the country or world. We all have read on Behcets and new member is a 5 year boy. (sad) It does not matter ones age or anything other than we help each other and are available for others who just get their DX.

The local Vasculitis chapter is terrific here in Arizona and Behcets is a Vasculitis disease.

I was wondering if anyone else has a group to go to in there city or state?
I would like to hear how each of you stay connected to others for support and learn new ideas.

Thank you!
M
Posted on 03/08/11, 11:17 pm
14 Replies | Most Recent Add Your Advice
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Reply #1 - 03/16/11  6:38pm
" Good questions, Mona! :)

I started having symptoms when I was 5 years old (according to my mom!) Over the years, I began to have new symptoms gradually but I had no idea what they were. When I was in my late teens and early twenties, I would get tonsillitis with fever and aches for weeks at a time. These mysterious "illnesses" would not respond to any antibiotics or antivirals and the doctors were completely clueless as to the cause. My mouth ulcers became worse and worse as well and doctors had no suggestions for that either. When I was in college, I had a bout of vaginal ulcers which terrified me and I went straight to the clinic on campus. All of the doctors and nurses treated me as though I had herpes, even though their test came back negative. It was awful! Then, while I was pregnant with my son, I had another bout of vaginal ulcers and went straight to my OB. Once again, they told me it was probably herpes, even though I told them it was not possible since I was married and had been with my husband since college. They did a blood test for both type 1 and 2 of the herpes virus and both came back negative. That was when my OB started to take me seriously and I could tell she was puzzled. I had been doing research on my own since the second bout of vaginal ulcers, and I had found BD and thought it seemed to fit. I brought it up to my OB and she initially told me she didn't think that was it. But after (I assume) she had had a chance to do some research on her own, she told me she believed I had been right about the BD and referred me to an ENT for my mouth ulcers and tonsillitis. The ENT was awesome and immediately confirmed that she also believed it was BD. Eventually I began to see a gastroenterologist and a rheumatologist and that's where I am now.

Since my pregnancy, the disease has become much worse than ever and I have struggled with it on a daily basis ever since I gave birth almost 5 months ago. Now, my symptoms include ulcers all over the place, fatigue, malaise, joint/muscle pain/inflammation, GI trouble, fever, etc. For now, I have just started Imuran with courses of prednisone as needed. I do not believe I have neuro-behcet's, and I have never had eye symptoms, thank goodness.

I live in California, and as far as I know we don't have a local support group. I have never actually met anyone else with BD (as far as I know). I would love it if we were able to start something locally! Your group sounds incredible, Mona! If only I lived in Arizona! :)

Take Care,
Laura "
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Reply #2 - 03/20/11  6:46pm
" I have been sick since day 1. I believe to have been having seizures since i was in 3rd grade. Mouth ulcers since I can remember. Rashes since I can remember. There are even notes on my medical files of genital rashes/ulcers since I was born. Stomach problems since I can remember. Migraines since age 10. Lung issues since grade school. High grade fevers since I was a baby. Weird blood counts (my parents were even told once they thought I had luekemia). I was always sick and always missing school.
When I was in my teens, things started to get worse. I had to sleep with my mom because my sleep apnea was so bad, it scared me. Arthritis in my knees. Constant headaches. Bad stomach problems. Really bad spine/neck pain and muscle problems.
In my early 20's, thats when I got the genital ulcers. 3 really bad bouts, one after another. Was told it was herpes, though it was negative all 3 times.
Late 20's all the symptoms came "together". I am guessing this is my 1st real big flare. Started with stomach, everything you could imagine possible. Then my toes went numb. 1st left foot, then right, then travelled up my left leg. Then the vertigo. Then crazy rashes....I mean crazy. Oral & skin ulcers. Muscle atrophy/fascilations/pain/weakness. Arthritis, costochondritis....seriously, list goes on way too long. Took about 2 years with this going oon to get diagnosed, but really, it took my whole life.
Doctors have ruled out neuro-bd with me. My brain lesions aren't in the right place apparently and t hey believe that they are from the thunderclap headaches I have had (vascular). My GP believes there is a strong possibilty that I may have M.S ontop of BD. Still haven't been tested. They were going to run the tests at NIH but I can't go back for my follow-up appointment. He also believes it could be a type of myopathy. They say when you have one autoimmune disease, it opens the door for others. I just hope they can help me with my neuro/nerve/muscle probs soon.
My whole family knows now that I have been diagnosed, that my Mother suffered from Behcet's too. It can be hereditary, so it makes sense. She passed when I was 15, so I only have some memory of how sick she was. I know she gave up on the medical system and testing. She had a hystercotmy at age 29 because they couldn't figure out why she had so much pain in the region. She had bad arthritis. She wouldn't leave the house without pants and a long sleeve shirt. She was covered head to toe in skin ulcerations. The doctors told her that these ulcerations wre due psychological depression. She ended up with chunkcs of lesh missing and nurses came to the house every day, she was told she may have been bit by a spider. She had migraines more than anyone I have ever known. She took so much acetametaphine with coedine. They blamed her many stomach ulcers on the pills. I now know why she took them, if I were not oon medication, I would be eatting just as many. She also suffered from nerve pain, so my Dad says. She dided from a brain aneurysm at age 42. She was going to the hospital 2 weeks prior to get pain medication injections from the headaches. She told me she was seeing things in a haze of purple. Jerks.
My luck with doctors is the same as my mothers. It is awful. I live in Canada, and free medical comes at a price. I live in a small city, and this jerk of a rheumy is controlling my whole life, even when I try to see a new rheumy. He has now taken me off Imuran and I fear the worst. I know how bad I was before I went on it. The headaches and nerve problems and oral ulcers have already started. Ugggh.
There are no support groups out here. There is one in Ontario, but that is nowhere near me, I am in B.C. I have one girlfriend I met on online support group and have met. We talk all the time, but she is in Ontario now, we used to both live in Alberta. I just thank god for the internet or else I would feel really lost and alloone with this illness!! "
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Reply #3 - 03/20/11  9:35pm
" Mona,

My first syptom was mouth ulcers. I recall getting them about 6 years ago when we lived in Michigan but I didn't think much about it. My GP told me to rinse my mouth out with Mylanta toreduce the pain and to not eat acidic food. Four years ago right after a move from Michigan to Maryland I started to feel terrible - aches all over, joint pain, severe fatigue and ulcers - mouth and genital, a rash on my legs which I was told by the GP later was erythema nodosum. I saw my new GP and he referred me to a rhuematologist right away. I went to see the rhuematologist and he mentioned Behcet's. I had never heard of it and once I read about it and how rare it was, I honestly thought it was impossible that I had it. Unfortunately, that rheummy did not do anything to help me. He said he wanted to see what happened. Shortly thereafter I had eye pain and saw a GREAT opthamologist. That was my first experience with uveitis and very dry eyes. She gave me Prednisone and sent me back to the rhuemmy with the explicit instructions to ask him for medication which is what I did. He actually said to me, "I wouldn't know what to give you since your symptoms aren't specific enough for me to know what is wrong with you. Besides, it's not like you are blind or having organ failure." Yeah, seriously. I called the eye doc and told her what he said. She sent me to another rhuemmy who was much more helpful. She (the new rhuemmy) told me that uveitis, mouth and genital ulcers are enough symptoms to meet even the strictest criteria for a Behcet's Disease diagnosis especially with all the other diseases that had been ruled out. Also, she said medicine isn't just for people going blind who are suffering organ failure! She started me on Methotrexate and Remicade which as really helped.

I believe my sister has Behcet's as well - she has crops of mouth ulcers, fatigue and joint pain. She does not have medical insurance, so she has never pursued a dx. Also, she does not seem to be as sick as I am. It is more of a nuisance for her. She lives in Florida and I in Pennsylvania now (yes, we moved again) so I don't see how she is effected day tp day.

I do not think I have Neuro-Behcets. I had 2 MRIs to rule out MS and there were no lesions then. My current rhuemmy is very aware of NBD. The big controversy in with my health care just now is the GP says I have diverticulitis and rhuemmy worries it is either Chron's or ulcerations and inflammation from BD.

I do not know if there is a support group in this area. I never really thought to look for a support group for BD or to connect with others with this disease until this last really crazy, scary flare up I had (still have somewhat) which started a little over three weeks ago and that is how I found this gorup. I have never actually met anyone with BD.

I hope you are all feeling well today.

Kelly "
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Reply #4 - 03/25/11  12:22am
" Hi Mona!
I am Diane. I'm 19 and I was diagnosed at age one with behcet's syndrome. When I was in the wonb my parents were told I was going to have spinabifida and that they should abort me, but they didnt, thankfully! I was born terribly sick. I had ulcers already and a horrible rash. It got worse as I got a little older.

When I was four I was in a wheelchair for a year. I had giant palm sized ulcers on my genitals. Scarred me something fierce.
My mother had a bunch of mental illnesses and abused me for years after my parents divorced. She rarely gave me medication and actually tried to get me sick many times. I failed eighth grade because I was in the hopsital for half of the school year.

When I was 13/14 the lymph nodes in my neck swelled to the size of baseballs. It hurt so bad. Doctors has no idea what was going on. They never did figure it out, just simply shrugged and left it at that. It happened once then six months later then four then three then about every month. I was in the hospital every time. Then all of the sudden it stopped. they still swell but not nearly as large thankfully. Has anyone experienced this?

My mother took me to mayo clinic...for attention from the family, not for my health...they tested and proded and poked me for a week. Their results were that I have a behcet's-like disorder. Which makes my case even more vague and confusing.

My symptoms are: exzema (havent had it since I moved in with my dad actually), faint psoriasis (comes and goes not bad at all really), arthritus, bone loss in my lower jaw..my teeth (i had an ulcer there that was left untreated which developed into a bone eating thing, but boneloss hasnt continued in the last three years), flat warts (got them in 2003, went untreated and now theyre all over and theyll never go away), skin ulcers (this is the main one. I get about two new ones everyday), mrsa and staph infections,not sure of the name but my intestines are wrapped around each other, never diagnosed but I have a lot of trouble with gas it escapes and travels around my torso and hurts really bad all the time, minor eye issues here and there, very rarely mouth ulcers. I know there is more but I cant remeber all of it at the moment.
I also have anxiety problems and depression, but those are gifts from my mother's treatment.

I feel so bad when i read other peoples symptoms, but then I realize how lucky I am. I deeply fear neurobehcets. I have always feared it. I actually am finding myself very confused lately, mixing my words, forgetting, and I have awful headaches. But this all started when I quit enbrel and started dapsone. Stopping enbrel depressed me and I still havent recovered so I am not sure if its a mixture of the stress, sadness, and medicine or what. I also have found myself very angry and sad a lot. Could this be dapsone?

I do not have any support groups. When I discovered abda online I actually cried. I have never had the opportunity to talk to someone like me who knows I feel. I have always felt like an alien. I thought I was alone.

Well, that's a little chunck of my story :) "
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Reply #5 - 03/25/11  2:54am
" Hello Everyone!
I am so surprised to have read so many stories,,,each story is a little different, but yet we all have the same common denominator.
I would have to write half a book to reply they way I really want too. Each of your questions and comments on every situation are so important to me and I want you to have correct information, so I am going to suggest some ideas as to where I found my information.
The MOST important thing I have experienced is to get treatment right away to avoid damage that will be with me all my life...I cannot change it, but it does not have to happen to you.
Some of you do have Neuro-Behcets and are not being treated for it. It does not have to be scary if you find a good doctor and watch for the bad signs like TIA's and have a CT of your lungs and a doppler ultrasound on your veins to rule out DVT.
First of all, one cannot have MS and Neuro-Behcets both. Neuro-Behcets is very similar at times as MS it takes a very experienced Neurologist to determine the difference. We can get lesions on our brain, brian stem and optic nerves.
I had two locations with lesions, but one can have Neuro-Behcets and the lesions not show up on the MRI. My lesions are gone but I still have Neuro-Behcets and the treatment I had first was Remicade, MTX and Prednsione and that did not work for me. So, I was getting bad and had a PE and DVT and almost died, so they used Chemo (Cytoxan), which worked wonders for me as the lesions went away.
Although, I am not in remission but I gained 80 percent of what I lost back.Before treatment with Cytoxan, I could not walk without a walker and I no longer am using a cane or walker. My eyes are still affected, but it can take up to a year to regain use of the one that is really bad as I had a lesion on the optic nerve and it is gone but the specialist said it can still affect the nerve up to a year afterwards. Some people never get Neuro-Behcets and they only have a mild or moderate case of Behcets. I have a severe case and I think it is because I had it for so long without any treatment.
Enbrel is not recommended for Neuro-Behcets and I never was treated with any TNF medicines. One thing I learned from others with BD is to taper off any medicine. I even missed Chemo, sounds odd to want that medicine! Our brain is powerful and any medicine that we had our body our mind decides we want it because it helped us and we do not want to go backwards, so our mind and body says we want it Taking Benadryl at night will help when we change medicines and if it is real bad Ativan for 5 days has worked, one can get a feeling of shortness of breath when a medicine is stopped without a taper.. Even if we start a new medicine, sometimes the new medicine takes awhile to work so our inflammation from Behcets starts to kick in and we feel sick again. This is temporary but if it lasts awhile one needs to see their doctor right away.
I highly recommend reading on Behcets Syndrome, Joanne Z has a book on the ABDA site and Dr. Yacizi has a great book just released in 2010 on Amazon. Those two books are a must read for anyone with Behcets and you will understand your disease and it will help anyone with this disease to gain knowledge. I bought Dr. Yacizi book for my 2 main doctors for Christmas gifts. (they were happy to have it and wanted to learn the lastest treatments also)
If you are going to a Neurologist it is best to find one that specializes in MS or Autoimmune Diseases. We found that a general Neurologist or a headache Neurologist did not know much about Behcets or the medicines to use, Behcets causes headaches and they are not usually treated as a just a simple Migraine, like someone gets that does not have Behcets.
I think you will find your happiness, quality of life and over all health will improve when one finds a good team of doctors that helps our health improve. If one is going to the same doctor and you are getting worse or if you have not improved, it is time to go to someone that knows about Behcets and has treated it prior and get a second opinion about your treatment and disease..
I have gone to NYU and seen Dr. Yazici and he will work with your local doctor. A University Clinic or hospital will generally have a good Rheumatologist.Immunologist.he has a double degree, as our immuunity is affected but not the same way as if someone had RA or Lupus. (example)
I recommend you sign up with the Vasculitis Organization, check it out online as Behcets is a Vasculitis Disease and they are doing a lot of research and the more of us the more money is allotted to research. They can provide a lot of information.
This year NORD has declared Behcets as a rare disease and we can register with them and they do clinical studies and are not just limited to the USA. but are International. Please register as this will promote more research on Behcets, as more funding for our disease will be available then. We have to be heard and not isolated as if there are only rwo of us in the USA with Behcets Syndrome. This is the beginning in finding a cure if we sign up with them. and let them know we have this disease,They have good information on Behcets too.
Many young people are being affected everyday, we just do not see a 5 year old on line telling us their story.They often do not know what is wrong, unless they live where there is a good doctor or Clinic that knows about Behcets.
I would guess many of us have had wrong diagnosis a least once or some of were told they did something wrong to cause this. This is a lie...nobody deserves this disease and not one of you did anything to deserve it. But we do deserve a cure and to be given the right medicine and to fight for a good quality of life.
I hope each of you have a good doctor and are getting the best treatment possible for your symptoms.
Best Wishes to everyone and I am praying for a cure!
Mona
I met Jayme online almost 4 years ago and then found her again on this site. It is wonderful to stay in touch with someone for years. I have met Joanne Z online in 2006 and she is now a friend of mine. It is a small circle and if you post on the Behcets group site on here and someone will try answer your questions.My eye sight is poor and I make typing errors, forgive me as I wish I did not. I cannot be online often, my sight is not good and I can only see wll enough to type for a short period of time, I hope this will change.
Best Wishes to Everyone!
Mona (HLA 51 positive for Behcets). "
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Reply #6 - 03/26/11  12:45pm
" Hi Mona
My first symptoms appeared shortly after a flu shot in Nov. 2005. The first signs were oral and genital sores that were misdiagnosed as herpes. Subsequent flares got worse and affected my joints, skin, eyes, and headaches.

My Dr. tested me for herpes and it came back negative, which led to the Behcet's diagnosis. My treatment is prednisone, plaquenil, and colchicine. I also went to a Tibetan Dr., who prescribed herbs. The Tibetan medicine completely cured my eyes, headaches, and almost all skin, oral and genital issues but not my joints. Getting consistant Tibetan meds is a problem. Some tissue was permanently damaged. I was able to lower my prednisone dosage to acceptable levels. I did try Remicade and Imuran. Neither helped me at all but they have helped others

Jack. "
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Reply #7 - 03/27/11  11:22am
" Hello Jack,
It is nice to see a man reply, as I know a few men with Behcets and sadly it tends to affect men worse in some cases. Also, from staying in touch with them for the last 5 years, I learned the medicines that work for women do not work the same for men.
One thing I learned is men are more prone to stroke and heart problems than women. Since you mentioned Tibeman cures for Behcets, I wanted to share an experience
my cousin had with treatment. She was in the Cayman Islands and became ill and needed treatment promptly, so they started her on medicine there, until she could get back to the USA. She arrived back to NY (where she lives) and went to her Doctor right away. He refused to treat her because she was taking medicine from another country that was not FDA approved in the USA, she then went to ER and not one doctor would treat her. She had to wait until all medicine was out of her body and then go to a Doctor and could not say she had previous treatment with a medicine not FDA approved or from a clinical study here. I would not recommend anyone not to tell their Doctor what medicine they have had, but she was forced to do this and it might have been the type of medicine she was on, I do not know.
I wonder if anyone else has had this problem? I find it interesting Jack, that you found a medicine/treatment that was from Tibetan that helped you. Since all medicine usually starts as a natural substance and is manufactured into a RX medicine, I wonder what the Tibetan medicine is in a raw form and if it is used in any processed (RX) medicine in the USA, Canada or the UK?
This is why they tell us not to take vitamins, herbs or any natural cures with our RX medicine, as they a lot of it is medicine in the raw form and can interact with RX medicine. I know Vitamin C boosts our immune system which is already overactive and they will tell one not to take it or to take very little of it because we have active BD (short for Behcets).
Have you ever tried CellCept or Arava? If you are not in the USA, the medicine may have another name. You take care and I hope you find something that works well for you. I am glad you shared your story and am interested in the conversion of the natural medicine to the RX medicines available.
I would like to share this last comment with everyone, I read an article online from a newspaper in the UK where a 16 year girl Has Behcets and in the article it STATED that she would not live until she was 60 years old. This is FALSE, Behcets actually dies out the older we get instead of getting worse like RA or Lupus. (examples) The Behcets Center will support this statement and so will the Specialist in Turkey. At the age of 60 or a bit sooner, is when it starts getting less active for the majority of BD sufferers. In the newspaper story about "Ruth" the mother said the comment that her daughter would die before then. I have had times of remission and active times and found that stress, the lack of rest, the type of treatment, and ones Vitamin D levels are all so important in how active our Behcets is and our overall health. I listen to my own body, some medicines or food makes one feel worse, this is sign not to take it or eat it for me. They are learning more everyday about this disease and that is why knowledge is power over Behcets. Sharing with others has helped me learn so much and we each our different but some things are the same.I learned that over treatment with Prednisone is dangerous, if anyone is really moody or feeling like a medicine is making your moods unusal it is probably Prednisone. One must taper off of it and not stop it suddenly or it can sause an adneral (sp?) crisis. If one is one steriods over or at 10 mgs it stops our own body from making cortisol. Therefore, for short times they will give us higher dosages then taper below 10 mgs. but I was on 10 mgs for almost a year because I would have a TIA everytime I tapered down, they had to find another medicine to work then I tapered down only 1 mg per month and then .5 mg a month. Now I am at 7.5 mgs and will have to go very slowly to 5 mgs. I wish you all the best and thank you all for sharing.(I hope more people share also) Jack and Everyone, I hope you find the right medicine or cure for your Behcets!
Thanks all of you for sharing and Jack I added the notes to everyone in my reply to you, please forgive me for taking a short-cut and I hope you understand and thank all of you for sharing your experiences. What is your Vitamin D levels, is anyones low? "
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Reply #8 - 03/27/11  12:52pm
" It's very interesting to read everyone's story! Thanks for sharing.

Mona - You inquired about Vitamin D levels - mine very low (8 sometimes) and remains low even when taking the big green pills from the doctor. A nurse at my rhuematologist's office jokes that he should send me to Hawaii to really get some good vitamin D from all the sunlight. Western PA isn't known for its sunny days! :o) "
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Reply #9 - 03/27/11  6:32pm
" Vitamin D.
I live in Phoenix Arizona, one cannot get any hotter and more sun! I had to be on RX vitamin D 100,000.00 iu's per week for 6 to 8 weeks until mine came up. Then I have to take 1000 iu's Vitamin D per day or they will drop down everytime.
This is common in several people with Behcets.
Take Care and I would suggest to anyone to try to get the level of Vitamin D up. I was told it takes Vitamin D, Calcium and Vitamin C to carry it into our system properly. I am not an expert in this area, so someone else might have better advice. I know it is a problem with a lot of Behcets sufferers to have low levels often.
Any ideas are welcome.
Mona "
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Reply #10 - 07/16/11  6:30pm
" I am just posting this in hopes of having someone respond. I have been having sores in my mouth and vulvar for over a year now and have not taken seriously to this point. Finally I was able to see a specialist and have a biospy and was only confirmed that I had "chronic inflamation" but the specialist looked at all my symptoms - swollen joints, migraines, IBS and he feels I have Behcets. I am at a loss and sorely confused as to what to do or who to try to see now. I've been to two other Doctors who just look at me strangely and don't believe I have anything. It takes forever - 6 months to 1 year to get into any specialist here. Any thoughts or words of wisdom would be most appreciate. "

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