Behcet's Syndrome Society
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were do i begin..... ouch could be a start tears another

had the vomiting bug last weekend... made me flare loads. I cant get around the house without my stick and anything outside requires the wheelchair.

unfortunately its not only made me flare its made my 9 yr old daughter flare. iv always worried tbh, as when walking shes always complained of pains in her legs we were under the muscle and bone unit at alder hey for yrs but they couldnt work out what it was. she has constant mouth ulcers (but then so do many of my cousins and relatives and even my brother) but this week actually had the genital ulcerations. my two sons also had the vomiting bug but the eldest is fine, my youngest is ill with something else as we speak- its endless. took my daughter to the gp thurs night and he conf both the mouth ulcers and genital ulcers, im gutted that she is going to have this life. we went for blood tests at alder hey on friday have to go back to see the gp on tues and see what he has to say. but i kind of know in my gut that she has it. im just devastated yet hopeful that by catching her so young she wont have to flare as bad as me. she went to town today with my aunty and was treated to a lovely build the bear, and the biggest knickerblockerglory you could imagine for a child, she came back beaming bless her.

i just feel so deflated. id rather go through it endlessly to avoid my kids having to. iv gone from being an active massage therapist/teacher, teaching yoga and zumba to being in and out of a wheelchair practically over night, i dont want that for tyler. iv had to quit my business, im having to consider deferring my uni degree as i just cant cope. I dont want this for my daughter.

im feeling like iv gone full circle, october was prob my most mobile month since june and this weeks im back struggling every step. its anightmare! that doesnt seem to have any end. even my toe joints and knuckles are hurting.

im down to 10mg a day of pred. they wont increase it as they need to relieve the pressure on my liver before i can start anything like azathioprine or infliximab. i go back on the 27th but i just know they are going to fob me off again. im sick of feeling like this cripple and putting so much pressure on my mum, i cant even see to my own kids properly when they are sick. its so deflating. its causing problems in my relationship. its endless.

feeling really down.,

and not wanting to gross you out but my memory is awful and i couldnt remember if i had taken a ladies thing out last night so had to check and found a pea sized lump on my cervix, it was quite hard to touch. i dont know whether its behcets related or not.... or if it could be something else... it just seems endless. i mean it could always be an ulcer i guess.

anyway my rant over

i know everyone else is feeling really low- the weather doesnt help does it.

My joints are killing me. went the pics last night with a friend though and my stick and it felt nice to actually socialise despite the pain.

trying to keep my spirits up. im usually so upbeat and motivating lol. im sure il feel better in the morning. not sleeping very well due to the pain atm so thats not helping.


6 Replies

I think you are intitled to rant with all you have got going on. Particularly now it seems as if your daughter may have it as well.

It should make it easier to diagnose in her and get treated sooner and in some horrible warpped way, you having behcets, may have saved her from having to go through a long drawn out diagnosing process. As I know from experience the longer it took to diagnose and treat the more disabled I became.

Anyone would be feeling low, what with having the vomiting bug, going down on the prednisolone and your liver suffering it is probably all adding to the way you feel and sometimes it takes a long time to get back to where we were.I have terrible mobility problems and any illness or stress impinges on this even more.

I had a similar experience this time last year as my liver was nearly in failure and had to stop everything except the prednisolone. I basicly hit the deck for a while but the liver blood results came right down and I was able to start the immune suppressants. My liver results have been near normal ever since and so hopefully this will be the same for you so you can get on and have the treatment you need.

It might be worth asking the G.P if you can go up on the steroids 1 or 2mg as this can make a big difference sometimes. Especially as you have been ill and have a lot of stress at the moment.

Hope some of this helps and things settle for you and your daughter soon.

Andrea :)


oh lizzy how awful to see your 9year old baby go through this pain... I would take this every day of the week to keep my children and grandchildren free of it.

I am so sorry for you, and think you need to be able to talk about this as I cant imagine anything worse.

Get that lump checked out, you need to preserve your energy as best you can to see your daughter through this. At least she has you and her aunty to show her what a strong role model looks like.

Lots of love Jill


Hi Lizzy - just saw the heading.

Yes I'm starting to get paranoid - ouch and you wonder what the next year is going to bring on that spot!

Also, as I've mentioned, I'm single - my dependents are my aged parents 81 and 76 - I think to myself I'm glad I haven't got immediate family that I'm worrying about and trying to look after as well.

All the treatment I'm having comes in handy though. Mum has mouth ulcers and Dad's skin tears very easily so I'm up there with all my remedies pretty quickly.

Love to all



Thanks for ur replies guys.

I can at least assure you all its not preventing the normal 9 yr old boundary pushing temper tantrums and cheekyness lol.

Im at the behcets clinic on the 27th this month. Last time i got to c a gynea dr i dnt kno if i will this time, so dunno whether to wait or whether to book apt at my drs.

As for the liver im hoping it does cone down by itself.

Hoping for some positive news on the 27th re starting a treatment.

Really fatigued and tired so speak later loveliemwah xxx


check on facebook, look up National Institute of Health (NIH) in maryland united states; they have alot of interesting info and more folks with similar issues to everyone out there....

also ask your gp regarding an rx that i have heard of, not diagnoising or anything just ask your dr regarding Colcrys (colchicine,usp) for mouth sores....see what they have to say... feel better today....


iv been on colchicine apt it can effect the liver so they took me off it, i was only on it 4 days lol.

Il see what they suggest for my daughter however, thanks x


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