Behcet's Syndrome Society
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Is it really Behcets?

Is it really Behcets?

I was first Diagnosed with a different type of vascultis called HSP but after time failed to heal (HSP last up to a year max) they found that I had the HB11 gene and said I have behcets. I never really get major mouth ulcers and nothing on my genitals so i was really confused by the diagnosis after doing research. Really it probably doesnt matter if it wegners or behcets as the treatment is the same but I still wonder.

I have been in the hospital at least 10 times over the past two years since this started.

Current meds:

Remicade 7mg//kg monthly infusions

Prednisone 40mg./daily

azathiprine 200mg

ompresisal 100mg

doxycyline 100mg

lexapro 20mg

So I wonder if anyone else has my symptoms...

vasculitis usually on legs or stomach (see image)

pain in hands, ankles, knees, fingers, and extreme burning in feet

pain in liver (constant)

tons of GI issues (bleeding, bloating, pain)

Testicle pain (three days of screaming on dilliuadid ivs was insane)

loss of hearing

blurry vision

I also have tons of CT/lab work, so if you have any questions please let me know.

Also are you guys getting issues with pain meds. My primary wont prescribe anymore... my pain management doc has yet to get back to me

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Hi,

A year and a half ago I was diagnosed with childhood onset HSP. Generally speaking it’s an illness found in children so I’m quite suprised you were diagnosed with it?

I get heavy petechiae and purpura, often on my thighs and chest but can be elsewhere. The loss of hearing I think can be associated with either Wegeners and Behçet’s. We thought I had Wegeners to at one point.

How often do you get mouth ulcers? Is it 3+ times in a year?

With Wegeners, you do tend to have positive ANCA antibodies, but with Behçet’s you don’t.

I’m only 16 but always here for a chat or if there’s anything you want to ask

Emily :)

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Hey Emily,

Ya I am pretty sure I have HSP as we did the biopsy which show IGA vasculitis. I got diagnosed at 28 so HSP was a super rare diag at first but made sense. I had mouth sores a few times randomly but nothing like I read about or see in pictures for behcets. I have not had any during my flares that hit my GI track/vascultis that put me in the hospital over the 2 years i have been fighting it either. I also always have had acne until I started prednisone for the HSP lol.

So first time I was tested for the ANCA I had a positive result which was dismissed by rhuma when i brought it up when I saw the test results a year later (I am finding I have to check everything as im not sure the docs do!)

Results: Atypical P-ANCA Titer1:320 titer<1:20 titer

Atypical ANCA was observed. This pattern has been associated withvarious diseases, including ulcerative colitis, Crohn's disease,chronic liver disease, rheumatoid arthritis, systemic lupuserythematosis, and on occasion, Wegener's Granulomatosis

It has been tested twice in the last 2 years and both those times it was negative.

So did they change your diag to Behcets from HSP?

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That’s very interesting. I once came back ANCA positive, but negative the other times. Mouth ulcers in Behçet’s don’t have to be extravagant at all. I get more genital ulcers and the Behçet’s centre of excellence observed scarring.

I think the criteria is 3 or more in a year for Behçet’s.

I’m not really sure if the Behçet’s changed the diagnoses of HSP, as I switched consultants many times.

My positive ANCA was dismissed too. Do you have a Fever

Or any other skin problems lesions?

Emily

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Acne still, scarring from prednisone stretching, and some random other random lesions that didn't look like in the picture but was dismissed by rhuma as well. With your HSP did you get the biopsy to confirm the IGA vasculitis?

Never had a fever with any of my flares

Thank you for taking the time to respond by the way!

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Hi , I was diagnosed with behcets in 2016 after going blind in my left eye , previous to that I was diagnosed with lupus in 2005 , I have had full term pregnancy with a stillbirth due to help syndrome associated with vasculitis and spent 2 months in hospital on dialysis ,due to kidney failure I have had several hospital admissions with severe joint pain and mobility issues . Loads of gi problems , I have had the same rash as yourself and suffer terrible with skin problems. In the last 2 months I have had two hearing aids fitted due to severe hearing loss. Currently on cellcept , predisilone which cannot be dropped below 20 mg tried inflectra but had lupus reactions , so currently on Humira . I to wonder is this. Actually behcets , I have been to the COE in Birmingham and paid privately to see an amazing rhuematologist , I think with us going through so many changes in our body we do need to question things . I pray for you to have some relief . I am always hear if you need someone to talk to , because i find it can be lonely even with so much support .xx

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I am so sorry for your loss. We have put off having children for now with the hopes I can become stable at least.... I dont even know if my sperm is viable with all these meds....

Interesting enough i cannot go below 20 of pred as well. even at 171.5 i get the rash and end up in the HP for a week with GI issues that cannot be solved as its "Just inflammation and should be this bad". I find newer docs are the worst at this and have stopped allowing students to be part of my diagnosis when i go in....

I went blind in my right eye but that was related to being over 90mg of pred for a long time. I eventually got my eyesite back thank god as we lowered the dose.

Thank you again for the reply and I will say a pray for you as well.

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I just read your post. I just wanted to say how sorry I am that you’ve been through so much!

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Not a problem

And no, I didn’t have a biopsy of the skin but I have had biopsies of my Kidney, stomach, small and large bowel, and oesophagus

What are the doctors thinking at the moment?

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Sorry for the late reply! I got really sick and just didn't feel like talking :P.

Interesting my doctor just went on FMLA so i am finding another rhuma to help.

I think the doctors dont care as I am not "dying" and therefore they dont give a shit. I may not be dying but I am certainly not living.

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That is a huge amount of different medications on your list, have they been regularly altered over time or have they just kept adding to the pile?

What did they say you needed each of these for?

Are you in the UK? Have you seen a Behcets specialist or been to a Behcets CoE yet ? Or was the diagnosis done by your local hospital ?

Have they actually seen the ulcers or mouth issues at the time and therefore seen it is the right BD ulcers then , obviously, for alot of us , we may have had ulcers or swellings in the mouth or on genitals but with the huge amount of other pain and symptoms just put that the fact that you get 3+ ulcers a year to one side, thinking that is nothing in comparison to the skin etc.

I definitely suggest that you send your information via email and diagnosis of BD to the Behcets email helpline and explain your recent history, recent symptoms, and the meds you are on and the fact your pain is still not managed and you need help. Definitely include any photos you have like above, a second opinion won't harm.

If you are not on with a specialist clinic you can also ask them to write to your doctor and ask him to refer you to them so you can be on the CoE books near to you, they are best qualified to help confirm diagnosis or send your local consultants in the right direction , they can also send proper recommendations for a better treatment plan to your rheumatologist , Dermatology , and GP which they cannot then dismiss. This is why it is best if you are in the UK to send the information to the email for Behcets CoE Nationally, and closest to you.

Hope you start to find some relief, we are all here for you with any support , advice or just a ear to rant to ( albeit affected by loss of hearing and tinnitus !) Take care.

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Thats the lowest I got for meds. I was actually on like 19 different meds at one point as my GI track was destroyed and this first all started.

I am in the US I called a new clinic today to get a second opinion. I am lucky enough to have great insurance so I can go anywhere (last year we spent almost a million keeping me alive lol).

I feel like docs dont think this is a serious condition and that I am just being a baby. I would love to go back to my old life but right now I would love just be able to go for a walk without my knees, feet and everything else hurting...

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You are preaching to the choir.

Nearly 12 years now with no definitive diagnosis, it was only coming on this site and getting help and advice from the Behcets Society and the great contributors that I am where I am now.

It makes me time that we are treated like we are liars and cowards because doctors only work on one symptom at a time and rarely discuss what is happening between them to get to the heart of what are clearly complex, multi system diseases.

I am glad you are going for a second opinion, and that you have the chance to go anywhere. Perhaps researching where you best Behcets Specialist or a centre of excellence for various autoimmune, vascular and rheumatoid illnesses is would be your best bet to finally get a diagnosis and treatment plan that suits you.

You can have crossover illnesses too.

In relation to having children, if you do want to start a family in the future, many of us have children , I have two with healthy pregnancies. Waiting at the moment , until you are stable is sensible , but perhaps it might be a good idea to prepare , have a sperm count done to see what is happening and store some up , in case future flares or medications could have an affect on your fertility levels.

Good luck and do keep in touch with us all to let us know how you are getting on , we like to hear your good news as well as the bad, or if you have any questions, no matter how small, we are all ready to help.

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I just had a thought which may help with your appointment with the second opinion , I don't know from what you have written what type of unit you are going to.

It may be advisable for you to get print out copies not just of your most recent blood tests, and your gene result, but the blood test results you had before your original diagnosis and were put on medications. This will give them more of an idea of what your body was doing when you originally began with symptoms and will be results that were not affected in any way by the drug regime you are on, which can give false negatives or deficiencies because of the impact of steroids on body function.

Take with you a full list of your symptoms, your family medical history, your most significant medical history ( you can get this as a record from GP) your clinic tests and results to date , your prescribed drug list and other drugs they have tried you on in the past , and record of hospital admittances.

Put these in a file for yourself and take a copy for them. Put each area of your body or things like skin, inflammation, circulation, etc. between marked dividers, so it is easy for you to check the right section being discussed with the right doctor. It is helpful for you in an appointment anyway in case you start getting confused or can't think of the accurate answer straightaway.

Create a file of your photos, a photo diary of what happens to you is vital in helping them diagnose because you will not always have the symptoms on clinic day and they like visual evidence to confirm what you say. Have these photos under different file titles too so you don't have to flip through lots of pictures that are relevant for one doctor rather than another. Take a tablet device with you to show them, not a phone, they cannot put a memory stick in their computer ( in case of corruption) and a bigger screen picture that can also be magnified means that they can see the details clearly, phones are too small. You can send them a photo file or take a memory stick with photos on to give them for your records.

Have a diary of your symptoms that are not visible too, and include any actions, foods or environmental things in it that cause a reaction or aggravate your symptoms. It is also a good idea to show them what your diet and exercise habits are too. Too many times , we get to the end of an appointment were they make assumptions on you having an unhealthy lifestyle based on your symptoms or blood tests and tell you to change things in your lifestyle which you already have done.

Definitely, get that first blood test result though, and hope this long list helps you with your new appointment.

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I’m in US too. The vasculitis society has some recommendations on doctors with that specialty. I’m in Oregon, we have one, there’s s couple in California but definitely a whole lot more going east. I just lost my BD specialist and see the new one in Friday. I’m nervous, hoping she’s good. I’m amazed at what you’ve been through. I had a similar problem when I kept having episodes of what seemed like strokes. My whole body would go paralyzed. Neurologists in my smaller town thought it was a psychological issue. It wasn’t! It was migraines. Sometimes they think they got it covered but they don’t always!

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Due to the opioid addiction crisis, you will not be able to get your pain meds as easily. Pain management probably won't help much because there are no physical therapy ways to control your pain.

For me, my pain is random. I use flexeril at night because it's not an opioid and it helps me sleep.

Really pray that you're symptoms relax and that you can get relief.

Rooki

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If you've had DNA testing come back positive then why the 2nd opinion? (Just asking) Is your 2nd opinion for symptom management? Are you on a biologic?

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Well the problem is I really dont get mouth sores or genital and I tested positive for HSP, Wgeners, and Behcets. I just really want to make sure we are using the right biologic this time. Remicade has helped a ton but i am still in so much pain from my joints and flare constantly even on 40mg of pred. I just went to the ER the other day for the worst migrane in the world and a non stop nose bleed. I just want to try to be cured lol.

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