Behcet's Syndrome Society
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Feeling down today myself :{

Morning, just need somebody to brighten my day, i`m feeling quite low, i seem to get to a point of where everything catches up on me and i just want to crawl under a rock and hibernate, and today is that day, still cant get Sinitta well, she had to have a chest x-ray done yesterday as she has had a continuous cough for 6 weeks on her 2nd lot of antibiotics, she saw the x-ray once it had been taken and she herself saw a shadow on the lower part of one of her lungs, any ideas? She is getting more and more ulcers daily, i saw her for lunch yesterday and by the time the early evening came she had 3 more of the buggers rear there ugly heads, i`ve contacted the prof from the clinic to see if she can possibly be seen earlier than Jan, not heard yet but hopefully will do today, sorry to have a winge, but need to vent some frustration. Will keep you updated. Love to all. x x x

6 Replies

Hi Tamirra I'm quite neew to the forum but I am guessing from your message that it may be your daughter that you are talking about?

It must be awful to watch your child go through pain like I am very sorry for you.

I feel poop today so I am under a cosy blanket watching all my favourite movies and ignoring the world, but I will think about you and hope that you feel brighter soon. Love Jill


I feel so much for you, I live in worry every time one of my children gets another ulser or aches and pains, that they may inherent this horrid illness too!!

Big hugs to you both x


It seems that we have all caught the same bugs doesn't it.

I think it has some connection to the time of year. It really is a difficult time especially for anyone on immune suppressants. I get paranoid every time I am out and someone sneezes without covering their mouths......I never used to be like this.

Tamirra...I hope you mange to sinnita in sooner that Jan or at least some advice from the Prof on what to do. Sinnita is really going through it and nothing seems to be taking hold quickly enough. It is usual for most immune suppressants to take some time to kick in so it maybe that they are not doing the full trick yet.

It must be exhausting for you also as I know how supportive you are and I think you deserve to have a hibernation day or 2.

I make myself give in for a day or 2 when things get on top as it is the only way to survive and live to fight another day, whilst they find out what is happening on her lungs....I had an xray recently with what was diagnosed with pneumonia and my behcets flared up at the same time.

So this appears to be common with most of us perhaps this is the same for sinitta and things will settle down for her.

I do hope so



Thank you all, im not feeling quite a bad as i did, had lots of tears today so maybe that`s helped. She has been on Cellcept for a good 6 months plus so i reckon they should have kicked in before this, am i right? I did think it might have been the beginings of pneumonia, but she is on a high dose ( 1 a day ) antibiotic so maybe this will shift it. Thank you all again so much for being there once again. x x x


hope you are both doing better today, i am and have been having a stay under the covers day or few days and do you know what I no longer feel guilty about it any more (well not today anyway!!) have a good day x


Thank you Ruth, yeah im feeling better than i did and Sinitta isnt too bad today, her headache eventually went but her ulcers are still appearing, got to wait until 21st Dec for her St Barts appointment which is a lot further away than i wanted, but what an you do when its not run all day everyday, and only once a month, well at least she has one eh? Take care and hope your feeling better tomorrow. x x


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