I am very glad I found this site.. It seems to be filled with very good information. I'd like to share my story and ask for your opinion.. It would be great to hear from people with similar experiences.
In the past 7 years I have had 4 major episodes with strange symptoms - 2006 small and mid size veins breaking under my skin on my limbs, gallbladder and kidney pain, in 2008 - synovitis in my right ankle, erythema nodosum on my thighs and arms and arthritis in my hands, and the oral aphtae. I also had 2 submandibular nodes swollen and painful. In both cases I assumed it was viral infections causing all this although I never tested positive for any virus except Epstein Barr. The symptoms also seemed to be winding down over the years so I thought they would eventually go away. Then in 2011 I had the 3 doses of the hep B vaccine.. and something seemed to go very wrong. My kidneys started hurting especially after a cup of coffee, I started getting eye attacks in both eyes also worse after coffee, bigger veins were breaking on my thighs and elbows and the arthritis was worse than before. Finally last year I contracted enterocolitis and I started getting pustules on my buttocks and arms. They gradually disappeared but I still get one or two after working out.
For the past 6 months I have not gotten any new symptoms and some of the old ones seem a bit better (eye attacks although still getting them but not as violent) while others seem worse like the arthritis (I had a painful attack on the cervical spine joint) and kidney pain.
Does this seem familiar to you? I forgot to mention, I do have a G.P. who says she thinks it is behcet's but the 2 immunologists I have seen sent me away saying that I have perfect lab work (no HLA B 51 or B27, no sign of inflammation). So far I have only taken arcoxia for arthritic pain although I can only tolerate it for about 1 week at a time.
Does anyone have a similar experience with vaccines and virus infections taking a long time to heal? Do you regularly get vaccinated for the flu, etc?
Thank you for any thoughts you may have on this! I hope we all get some relief from this painful condition and be able to lead normal lives..
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Lara1
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Hi Lara, well I can only convey my story to you. I have been suffering for 27 years with various probs, eyes, mouth, nose throat and vaginal anus ulcers, skin lesions, aches and pains all over. Had bloods scans X-rays but nothing ever shows or gives a result. After 10 years I was seen at Hammersmith hospital and after seeing many docs in all departments and almost 3 years the consensus was Behcets. Things have much improved since then with more informed docs, meds and treatments. But, to this day some docs still feel that it is not BD. The important thing is I am getting some treatment and coping and through all this have had 2 children and went back to teaching for quite some time. It isn't easy suffering an autoimmune disease and our symptoms and treatments vary greatly. Perhaps it is Bd or not but I understand your need to know. I suggest you ask your doctor to refer you to one of the Centres of Excellence which are based in either London, Birmingham or Liverpool and hopefully you will find an answer.
Good luck and stay with this site, I'm sure others will reply also.
Thanks very much for sharing your experience .. Do you feel any changes in your symptoms after 27 years? Is there any sign it may be running its course?? I think I read somewhere that it tends to get better over time??
Have you had any vaccination when you were not being treated? If yes how did your body react?
Sorry for asking so many of questions... I am new to this and very excited to talk to people who understand what I've been going through .. It feels good to know that I was not insane..
Thanks again and lots of smiles and hugs to you as well!
It isn't unusual for people with behects to have no inflammation markers in their blood and yet still be having a flare of Behects Symptoms. Also, the HLA B 51 test is not positive for everyone.
This is one of the reasons it can be difficult for Dr's to agree or confirm if it is behects or not. Some of here spent years in the system trying to get a diagnosis because there is no test as such that proves you have behcets.
I took over 20 years to be diagnosed and I often didn't have and still don't at times have inflammation in the blood even though I could be having symptoms..... But as billi says things are much better now especially as we have these Centres of Excellance.
If you live in England you can ask to be referred to one of the Centres of Excelence. If you go to the Behcets Society Link
and look under the heading of "contact" this will give you the information on the 3 Centres in England.
If you are not in England but still in the UK you can ask the Behects Society for a list on consultants that are experienced in diagnosing and treating behects. Of course there is also the option of asking one of the specialists you are seeing to contact the C.O.E and speak with one of the Consultants there to get their advice.
While you are on the Behects Website there is lots of other info which can be really helpful such as factsheets with diagnosis criteria and various symptoms and treatment.
I suggest looking through them and printing off what you think makes sense to you and writing up a history on one page of symptoms, consultants where and when, medication tried and if it worked or not. Also take photo's of any visible symptoms as I know from experience so often they are not there when you see the Doctors.
As for other illness such as virus's, colds, infections they can take a long time to clear even if you are not on Immune Suppressants. One of the symptoms we get as well is feeling hot and cold even if there isn't an obvious reason....this is possibly due to the immune system going crazy when it shouldn't.
There is some talk of there being a trigger point to behcets starting and we have had many discussions on our own possible trigger points such as accidents, virus's etc.
So as you can see it isn't an easy question to answer and hope you have found my info useful.
I wish you luck in finding the solution and we are always here to bounce off of on your journey or just to have a chat.
I have had a couple of injections due to travel and whilst away became really quite poorly but decided it was more the change of climate, water, food etc rather than the injections but cannot be certain. I find if I stay in Europe usually France, Spain Italy I am ill for the first few days and then enjoy rest of my hols. As to your other question......age itself takes its toll on our bodies but I have found that my body seems to be accelerating faster than my friends. I have Spondylitis of the spine almost top to bottom which the docs say has become worse faster than other older patients....I am 62 years by the way. Is this due to BD or not....who can say. I am in a BD flare just now for last 10 months and it is feels worse than usual. Is this because of my back probs, age or the BD itself. Sometimes in all walks of life we cannot find answers even though we desperately think we need them. I am more patient with my body and if I need to rest I do and when I can do things I do them but routine is out of the window. I now listen to my body rather than my mind, if that makes any sense.
Anyway I do hope you stay with the site, we Re a friendly bunch and share our pain, advice, tears and happiness.
Don't be afraid to ask anything as we have all left our pride at the door!!!!
Definitely agree with Andrea re triggers (have a look back through the blogs - there was one where people put up what they thought their trigger was). A lot of us have had vaccinations with no problems - not to say that is the same for everyone.
With the pustules on the bottom I had something similar and from memory it was an allergic reaction to a drug - sulphur I think.
To get a diagnosis with Behcets it usually is a long road and sometimes 'luck' when a doctor finally picks what is wrong with you.
Hope it all works out - for the time being you are your best nurse - work out the things to stay away from (like coffee). At the risk of sounding like a hypochondriac - keep a diary and even take photos - when you finally get the right doctor they will be grateful for them and it will help with your diagnosis. On the same theme one of the registrars at the hosptial told me to make up a medical file at home and when you see new specialists give them copies of what you have - that way they are getting all the relevant information. (There is a fine art in not overdoing it).
There's good advice above - can I just add a thank you for posting this. I'm looking for vaccine experience and HepB is on my list.
Can I ask - what your doctor was aware of before you got the vaccine? I was wondering whether a firm diagnosis would have stopped him from giving it to you...
Thank you so much for all the valuable information! I'm so glad I have found this site. I will start reading everything on it thoroughly and keep posting my thoughts / questions. I am beginning to realize this is a very complex disease and we are barely scratching the surface with what we know about it today.
I had the hep B vaccine in Bucharest Romania where I was living at the time and the G.P. who I saw for it was aware that I had had at some point back auto immune antibodies positive (anti smooth muscle and anti nuclear) and the breaking veins on my limbs. It is very funny you would ask that question because that's exactly what I asked him - aren't these auto immune symptoms have some impact after the vaccine ? He said no.. The reality is completely different. I am now living in Luxembourg and one of the immunologists I saw here told me that vaccines have no impact. Personally, I am not getting another one .. ever..
To recap, thinking in retrospect, I think I "had" it since childhood. I remember year after year of really bad tonsillitis that would not go away when I was about 7-8 years old. Then as a teenager I started getting very strong headaches when I was very sensitive to light and the only way they would go away was to lie in a dark room for a day. Then in my twenties I had a lot of emotional and physical stress and I noticed after one event a fog sensation in my brain, dizziness and short term memory deterioration. I still have these symptom today although I've learned to live with them.
Then in 2006 I definitely contracted some virus which threw my immune system completely out of whack and that's when the visible signs and symptoms began. Plus the fatigue. The same for 2008. But while the symptoms produced by the viruses seem to go away eventually, some of the ones produced by the vaccine seem to be getting worse. Probably because the vaccine is designed to keep stimulating immunity.
I was told by the immunologist here that if I had anything I have a borderline form of the disease and that I should not worry too much. While I do not think it is smart not to worry about something as serious as this, I did seem to have more of a self-limiting type of inflammation. At least that's what I believed until this week when I realized the arthritis is definitely progressing.
From my own observations I have noticed that I would get an attack either when I am very tired or stressed - so low immunity or when I change my sleeping routine, even if I go from less hours of sleep to more hours. It seems that it takes a couple of days to adjust. Do any of you have this?
The bottom line for me is that I will try to get a clear diagnosis - I am seeing a specialist in Paris at a center of excellence there. I'm not sure if I would have access to the London one but I will look into it. And I will try to limit the progression of symptoms as much as possible. So far the only treatment suggested is either voltaren or arcoxia. Does anti inflammatory medication really stop this disease? I'm thinking not but I would like to hear from you. Also, I have read some studies that say that interferon is a promising treatment. Had anyone tried it?
Thanks again! I will keep contributing as much as I can. All the best!
Have you looked at the factsheets that the Behcets Society have produced as they give you lots of info and in particular treatments that are used for specific symptoms connected to behcets....the link is here
You will see lots of different titles that have factsheets attached to them. We advise people here in the Uk to copy those that make sense to them and take them to their specialists....perhaps some of them could help you.
I know some Dr's profess to know Behcets when in affect they don't really and they just try and treat the symptoms and not the disease. Some Dr's also say it is self limiting and it burns out eventually or that it fluctuates in flares. But in my case and others here it has not got better as time has gone on or burnt out and mine has never had a break in over 20 years.
That's not to say that this will happen to you but you seem like someone who is really interested in being proactive in sorting out your health.
As for the sleep issue...I really have problems with sleep and too much sleep seems worse than not enough to me. I have apnea's during the night which means the more I sleep the more apnea's I have which means I end up feeling exhausted by the morning. I sleep approx. 2-3 hours a night at the most and have a CPAP machine, which helps a bit. I also have something similar when I am awake which means I have breathing diffciulties all day. The respiratory Hospital in London are still investigating this.
With my immune system it seems to be reving up all the time and so I very rarely get colds and things, but just feel ill virtually all the time. You may need to look at it from a different angle in the sense that your immune system may not be low but in fact be too high and burning you out all the time.
Hope some of this is helpful and makes sense
Good luck on your journey and keep writing in as we love these sorts of discussions.
Thank you for your answers. I am starting to get a glimpse at what it would feel like to have constant pain and discomfort as opposed to every now and then. And it is no fun.
To me it feels a lot like a matter of balance. It feels as if my immune system is slowly losing ability to regulate / balance itself and that small things like a cup of coffee or sleeping less one night are enough to send it into a tailspin of reactions trying to adjust. I am wondering if there is any research on what immune cells are involved in behcet's? I can't recall coming across any on the Internet.
Hi there, just to very briefly come in here and say vaccinations rank as one of my largest triggers. Was hospitalised after course of vaccinations to go to India and am very very wary of having others. I would never have flu vaccination for eg. Tiredness, stress, change of routine all triggers for me too Lara.
Hi and thank you for sharing! I would expect it to be that way as vaccines stimulate an already over reactive immune system. At least my experience shows that. I'm not sure how you could "treat" a vaccine except intervene on the immune system itself. With viruses / bacteria you may also treat the pathogen.
Going back to one of my questions - has anyone been treated with interferon ?
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