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Bechet's Syndrome

(10 Posts)
captaincogsworth Sat 13-Aug-11 15:37:28

Bit of a long shot, but has anyone got this or know about ttc with it. I know its an autoimmune problem so I'm now thinking about killer cells again etc.
Here we go again!

Havingkittens Sat 13-Aug-11 18:39:07

I'm afraid the only person I know with Bechet's is a bloke so I couldn't shed any light. There is quite a big area on the Fertility Friends forum on immune issues so might be worth asking on there as well as here.

BagofHolly Sat 13-Aug-11 19:42:43

There was a cons in the dermatology department at Amersham Hospital who had a special interest in it and prescribed anti TNFs and T cell modulators for it. So yes, you're right in nk/autoimune territory.

NorthernChinchilla Sat 13-Aug-11 21:10:48

My partner was diagnosed with this, but obviously not an issue ttc.

Main problem appeared to be- and it has calmed down now- various ulcers around the body, and by ulcers, I mean serious ones. It is an auto-immune illness, so there could be effects either with the illness itself, or any drugs used to treat it, ie. the immuno-suppressants. The anti-TNFs mentioned above, for example, can increase the risk of some cancers (my mother was on these for a while because of rhuematoid arthritis, another auto-immune illness).

Sorry there's not much else I can provide on this, but definitely discuss with your doctor before you go any further.

Best of luck.x

captaincogsworth Sat 13-Aug-11 22:01:04

Thanks for that HavingKittens - I shall definitely go over there and have a read.

BagofHolly that is really encouraging thanks. I have family living close to Amersham so even his private clinic may be a possibility. smile

And thanks NC - I was a bit scared when I read about the treatment possibly increasing your cancer chances. I suppose it's all a question of balance. I have very bad ulcers also in various body parts. Nasty. My sympathy to your partner.

Havingkittens Sat 13-Aug-11 23:00:39

It may also be worth calling Mr Shehata's clinic and just asking them if they think Bechet's sufferers are likely to be predisposed to High NK Cell levels. They are very helpful. I am being treated by him on the NHS and his team are very nice but I think you would have more luck getting a response from the Private clinic.

NorthernChinchilla Sun 14-Aug-11 13:58:14

Hello Captain- sorry to hear about the ulcers, I know where they can turn up and the problems they can cause. If it's any comfort, my partner has been free of them for a while- about four, five years, and so it would appear it's all settled down, so it can happen. Thank-you for the kind words on my DP.

Hope I didn't scare you with the stuff on anti-TNF, but thought it's best to give the info on these things. I've got a fair bit of background knowledge owing to my Mum and my partner's illnesses in this area. As the drugs for auto-immune diseases work by essentially squishing down the body's own immune system, it's one of the things to consider. Anti TNF stands for anti-tumour necrosing factor (God knows sp.). However, it's only an increase in risk, NOT a definite outcome.

However, there's loads of expertise out there, it's just the difficulty of getting experts in pregnancy and auto-imune illnesses to jointly agree the best path for you.

Wish you the best of luck in ttc, and hope to see you on one of the antenatal groups soon.

captaincogsworth Sun 14-Aug-11 16:08:28

Thanks again - I don't hold out much hope on the ttc front - been trying forever and getting very quite old for too much possibility sadly. I wish I'd been diagnosed years ago and then I may have had more chance. Hey ho. At least this way I may understand a bit better why things are the way they are.

BagofHolly Sun 14-Aug-11 19:56:27

In your position I'd think seriously about seeing someone who can do a full NK assay and then advise on moving forward. One of my NKs was sky high, and I was managed on steroids alone. You don't necessarily have to go straight to anti-TNFs and monoclonal antibodies, there's a lot that can be done in between.

There's an immune section of which is incredibly useful. You could also see:

Dr Hassan Shehata at The Miscarriage Clinic
Anyone at ARGC
Dr Amin Gorgy (based in London, google)
Dr George Ndwuke at CARE in Nottingham

They all test and manage NKs with great success. But I think you do need to see someone. These things don't spontaneously resolve themselves.

A good read is "is my body baby friendly" by Alan Beer. His website (repromed) is worth a look.

Apologies if you know all this, very good luck! x

captaincogsworth Thu 18-Aug-11 21:55:45

Thanks again BagofHolly. I have looked of Fertility Friends but found it a bit confusing TBH - it doesn't take much!!!
I'll look again with a bit more direction from you now! smile

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