Anyone else have hughes -stovin syndrome like me??

[slappy]

Just joined,

thought see if anyone is unlucky to have this form of behcets?

thanks

james

[goodlife]

Hi there James...I had to wikepedia hughes-stovin I'm afraid as I had never heard of it.

Blimey I thought that Behcet was rare....this variant muct be extremely rare.

I hope that you do find others with the same syndrome exactly but remember you are still a Behcet family member.

You will find the forum warm and friendly and very supportive.

Maybe when you settle in you would like to tell your story?

If you want a post to be visible only to members of the group you can tick a box at the bottom of the post so that only those registered with the forum.

Welcome.

Jill

[xandii]

Hi James hun,

I hadn't heard of Hughes-Stovin either so I went and found out what I could about it. A very rare variant of a rare disease !

I hope you find you can talk to us here and share your story. We are all pretty keen to learn about variations of BD and how they affect someone and your story would be of particular interest. I am sure you will find us supportive and a friendly sort of bunch...even if you just want to sound off and let off steam at times, there is always someone here to listen.

I really look forward to hearing more about how your HS has affected you and different ways you cope with it and you never know....you might pick up some tips here too !

Take care Hun and thanks for coming on to let us know you are here. I look forward to speaking with you in the future really soon. big hugs xx

[andreafm]

Hi James

Welcome to the forum....hope you find us all friendly and helpful

That really is interesting...was it difficult to get your diagnosis ?

Andrea

[slappy]

Thanks All!!

Yes Took a few years to find out what had,I ended up going to the Royal Brompton in London under proffesser Wells Team to find out!

I was coughin up Blood for a few years and No doctor local to me in Somerset was able to know WHY this was happening,I was on warfin for a while but my bleeds got worse as you can tell ;-(

I ended up stayin in hospital for 3-4 months in one go but thank god london and USA doctors helped due to fact my uncle was working for the pentagon found the illness.

I ended up having a year of chemo,on steriods which im still on and get seen every 6 months now as settled alot!

I had my chemo start jan 2005 ended 2006 so been a while but a hard trip as you can see had its ups and downs but I ve been blessed with a young son who is 4 in june and we have a little girl arriving start April so All the doctors that said i could not have kids were wrong!

I was put on azathioprine last year to help my joint pain and back but i decided to stop it due to side effects i read but have been feelin alot worse now and joints feelin really bad more and more,I also catch EVERY BUG around doesn t help son going nurserey and mrs being the deputy manager for the nurserey too ;-(

Im just glad the coughin of pints of blood have stopped now and i only ever get bad bleeds if have a real bad chest infection and been coughin alot as puts stress on my vessels in my lungs and vessels from heart to lungs as its the walls of the vessels that are effected by mu illness,sorry to say!

I did get told there were only 2 of us in UK with this illness at time of 2005 and My insurance i had on mortgage at time never paid out as illness was SO ""Bloody rare "" bit joke but we live in a Silly world suppose!

Glad found site

all the best

James

[lesleyg]

Wow! I didn't know they had started giving the variants names. How annoying about the insurance - did you win out in the end?

Welcome to the group.

Lesley

[slappy]

No i didn t after taken them to financal ombudsmen aswell!

Yes not a very nice form but we never choose what we want with diseases do we ;-(

Do many people take azathioprine for there behcets on here>>

cheers james

[pinkclara]

hi james

i use the forum as my young daughter has BD. started azathioprine one month ago as she has had an ongoing flare for 3 months now and been hospitalised 3 times during this period. she hasn't experienced any side effects (as yet) however she does not appear to be responding to the drug along with regular iv steroids. consultant says everyone is so different and he will probably try something else soon. you sound like you've got good drs, as have we and i hope you find something that works for you

clara x

[slappy]

It takes up to 3 months for azathioprine to work,Your young daughter will need blood tests every week ,2 weeks at start to make sure all is well as its a very powerful drug to be fair,Steriods do help i was 10 stone when rushed in real bad coughin up loads blood worse case and after having large amounts steriods 10 weeks in hosp i was 14st 7 lol but did be good!

We all don t care what weight we put on change in our lifes to be better and less stress on our familys thats for sure!!

it took long time but got there in the end,Does your daughter have lung functions??

regards james x