Removing tonsils in a behcets patient, good id... - Behçet's UK
Removing tonsils in a behcets patient, good idea or not??
Hi Tamirra
I had my tonsils out in 1978 when I was 18 years old and it was pretty difficult as I was on a children's ward and ended up having to stay in because of complications, whilst all the kids went home with no problems.
I personally feel that the tonsils are there to protect the body from infections etc but my tonsils were in a very poor state as I'd had previous constant boughts of ulcers on the tonsils and throat, that couldn't be helped with antibiotics and had also left scars.
When I was seen in 1999 by an immunologist/rheumatologist and disgnosed with Behcets, it was suggested that what the ulcers were probably Behcets and not Tonsilitis after all, hence the antibiotics not helping.
I have since read that previous diagnosis of tonsilitis [throat ulcers] feature frequently in a Behcets patients history.
I know this doesn't really answer your question but I thought it might give you food for thought on the subject.
Andrea
Thank you Andrea, my daughters illness started with tonsillitis and just got worse and worse until she nearly died of serious complications, she seems to be getting it now every few weeks and antibiotics do stop it in its tracks but soon re-appears, hers are scared terribly with deep holes and very close together she finds its difficult to swallow and breath at the best of times, still not sure what to do, her specialist told her they try not to operate on behcet`s patients unless it really troublesome as they can get serious complications. x
Hi Tamirra;
Behcet's Disease do not think that would cause acute or chronic tonsillitis. Tonsillitis, ASO, CRP and RF effects, such as signs, the disease makes it difficult for the detection of multiple factors affected the system.
To discuss;
Thank you sunset.
Hi Tamirra
Your daughters story sounds pretty similar, except at the time Behcets was even rarer and unthought of in those days. It was assumed that all ulcers on the tonsils must be Tonsilitis and I was having this so frequently that I had worked my way through virtually every antibiotic on the list. The doctors then were saying I would grow out of it but obviously wasn't by the age of 18 years.
The consultant who diagnosed me with behcets in 1999 explained that the tonsils/throat were probably also infected by then and that I probably had complications because it had been left so long for them to take them out.
At that time ulcers on the throat and feeling very ill and weak, were the only symptoms. Strangely after the tonsils were removed I didn't suffer the throat ulcers anywhere near as bad as I had done....but still got them [and still do now] and I seemed to start to get them systemically in other places instead i.e vaginaly.
Not sure, if there is a connection with having the tonsils out or not. Did the specialist say what he meant by "complications", only the not breathing and swallowing she gets now, sound pretty serious to me. This was what I was also like by the time I had mine out at 18 years and I remember the doctors showing me the tonsils in a jar, after the operation saying "no wonder you weren't feeling well".
My story is more one of thoughts in hindsight and personaly for me, but I still would have had the tonsils out, even with hindsight.
Andrea
Thank you Andrea, you say you think having the tonsills out caused you to have the genital ulcers, Sinitta ( my daughter ) already has these fairly often and very bad as she has to go into hospital on IV steroids to get rid of them, the specialist means infection after the operation due to the low immunity can be pretty bad, they have told her she will have to go on a weeks course of steroids before the operation to help reduce the infection. x
Hi Tamirra and sinitta
I can't say for sure that having my tonsils out caused the vaginal ulcers, except for it followed on after I had my tonsils out. It could have coincidental and have been a natural progression of behcets as I wasn't dignosed then or having treatment for behcets at that time.
My genital ulcers and foliculitis on the bottom flare at the same time and for last months. As they are settling down it seems as if another flare is coming up behind. So I suppose this does feel as if they are going on forever when in fact they are waxing and waning, but never really going away.
I can't say I have ever really been symptomless, but since I have been on methotrexate the episodes of ulcers/foliculitis are lasting shorter periods and less aggressive.
hope this helps
Andrea
Hi tamirra and sinitta
If you have a look at this link from the Behcets Society Website, which is written by a skin specialist who deals with Behcets you will see that acnaeform and pseudofolicultis lesions are frequent in people with behcets. Along with a whole realm of other skin lesion problems.
The link is:-
behcets.org.uk/Documents/we...
Having said that it should be diagnosed properly to definately say what sinitta is suffering is connected to her behcets as the specialist says it isn't usually on the face, but other acne looking pustules can be.
I also know that some medications can produce acne as a side affect so it is important to distuinguish one from the other. If you look at the advice sheets that come with the medications, it may say acne is a side affect. I know that Predisolone [Steroids] can produce acne, so it is worth looking at the advice sheets.
My folliculitis is on my bottom and also occaisionaly odd one's here and there. It does look like acne but isn't. It also looks like Herpes but isn't.
I too have never suffered with acne, but do not ever [so far] have any on my face....but other behcets sufferers may say different.
Andrea 
Thanks once again Andrea i will look through the link, Sinitta has just come back from the doctors RE her tonsills and he thinks the best thing would to have all the bad ragged bits cut away. Also this is now confusing, my husband never knew his father but he is what we think is 100% Cypriott, but the doctor reckons that is he was 100% Cypriott then Sinitta would not have Behcets as you have to have some Turkish in your blood to have the illness, so we now wonder if my husbands father could have been Turkish and his mum Cypriott, how true do you think this is, have you any Turkish blood in your family whether its now or past generations as we are very confused now. x PS hope you dont mind me asking, its just that my husbands mum died when he was 2 and he never knew who his dad was. x
Oh tamirra
It is most concerning that some doctors still insist that people cannot have behcets without having some turkish in the blood.
I haven't as far as I know got any ancesstors that are turkish or from any other silk route country and there are many people diagnosed with behcets in the UK and America [and other country's of course] that do not have turkish parents or ancestory.
I am not an expert but, The Behcets Syndrome Society state this:-
"No-one knows why the immune system starts to behave this way in Behçet’s disease. It is not because of any known infections, it is not hereditary, and it is not to do with ethnic origin, gender, lifestyle, age, where someone has lived or where they have been on holiday".
So please do not confuse yourself over whether there was turkish within your or your husbands family.
I am sure that there are many others on this forum that do not have turkish [or any other silk route country] in their family.
I am glad that the doctors are going to try and deal with the tonsils issue as this hopefully will help sanita as it sounds like it is really dragging her down.
Hope this helps your confusion
Andrea
Hi tamirra and sinitta
The condition was named in 1937 after the Turkish dermatologist Hulusi Behçet, who first described the condition of recurrent oral aphthous ulcers, genital ulcers, and uveitis in the eyes.
Behçet's disease is considered more prevalent in the areas surrounding the old silk trading routes in the Middle East and in Central Asia. But it is not restricted to people from these regions.
As time has gone on more has been learnt about this condition and it is now agreed that people from all sorts of other countries also now have the disease. They still do not know why it happens and more research is needed to find out.
In 1989 I was misdiagnosed with M.E [Chronic fatigue Syndrome] which was nicknamed then as "yuppy flu" because it was thought that only well off middle class people got the condition and it was really psychological burn out.
When I had to visit Doctors then, they used to say things like "does it really exist ?" or "oh it is that thing where you are tired all the time ?". It was pretty difficult to get Doctors to help me and some of them at that time were incredibly rude to me. As time went on it was established that it was a real condition and so now it is not looked at by Doctor's in the same way, but you still do get some Doctors stating that it doesn't exist really or "it's all in your head".
I think what I am trying to explain is that it takes a long time for some of the myths that come with rare conditions, to go away and so some Doctors still say things like you have to be Turkish or have Turkish in your family.
Thank god we have organisations like the Behcets Syndrome Society that spend a lot of time educating people including Doctors about this disease....but I guess there is still more work to be done.
Hope this makes sense
Andrea
Morning, yes in a way it does, but i suppose what im looking for is the truth behind my husbands Ethnic origin, its such a kept secret about how his mother died back in the 60`s and who his actual father was, the only person that really knows is his godparents who for many years have told him many different stories, he is coming on 50 now so its about time they stood up and spoke out, even more so now, as we are struggling with our daughters condition and would like to know maybe this is how his mother died, as you well know back then they didnt know half as much about anything as they do now as its quite possible that she could have passed away having complications with the illness, the society i know says it does not run in famlies but we have been told by a specialist in London that it quite possibly does, i could sccrreeeaammm........... 
Morning Tamirra
I sent you a personal message so you can discuss it in private if you want to. If you go into your messages you will see one from me there and be able to reply to me.
Andrea
Hello Tamirra and Andrea,
Apologies that I am late to this thread but have only just discovered the site
In brief, I also suffered from 'tonsillitis' for many years since childhood - with flare ups and remissions. I was also told in the '80s that I was suffering from M.E - but was eventually diagnosed with BD in my mid-30s, about 10 years ago. My bouts of tonsillitis (which are also now believed to be caused by Behcets ulcers) were completely eradicated by a permanent low-dose course of antibiotics (over several years.) I have never had a proper bout since, though have other throat problems. Perhaps this is something the doctors might consider for your daughter Tamirra, if they haven't already done so?
I decided not to have my tonsils out but the genital, nasal and oral ulcers became much worse after the throat ulcers were dealt with.
A number of doctors have mentioned hereditary causes and particular gene involvement - I am sure some people have these factors but many others with Behcets do not.
All the best to your daughter Tamirra, it is so hard at such a young age.
Thank you Klaris for your kind words, my daughter is possibly having a tonsilectomy, she`s got an app with ENT on 10th of next month to see if its possible as her tonsills are so large and scarred. I am aware about the genes involvement, her father is a Greek Cypriott which is obviously where she has it from, but the clinic of excellence which she attends also say you normally have to have either Irish or Scottish blood in you to have Behcet`s, not sure about that though as we dont have any in our families, and my uncle does geneology and has gone back to the 17th century and says there is not any in the blood at all, not sure what other peoples opinions are of this??
Hi
Sorry to jump in almost a year later.. I resonate with some of your questioning as I have just found out about this and I also started putting together bits of facts in my family I have heard over the years and now I have a strong suspicion two relatives from my extended family died from it. So while I do believe there is a genetic aspect to it I think it should not be taken to mean that only people of certain ethnicities get it... By the way I have no Turkish or any other Silk Route ethnic background as far as I know. Personally I believe it is a degenerative disease of the immune system brought about most likely by a certain socio-environmental context occurring in some of the countries mentioned more frequently but not exclusively.
What I would like to know is do we pass on a worse form to our children and great children? Is there anything to be done to prevent it in the people who have inherited the gene(s)? My guess is it will take medical science many more years to have answers..
Does anyone just get one or two big ulcers in mouth instead of a cluster of them during a flare up ? I seem two get one big one on tongue
