Behcet's Syndrome Society
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Treatments when finally diagnosed?

Ive been considering asking the doctors if it would be possible to get an NG tube once im finally diagnosed.. I barely eat at all anymore from the stomach pain and nausea, and im getting pretty unwell and underweight. Oh, and if i anyone could tell me the treatments theyve been on and what i should expect, that would be great! Stay strong everyone. God loves you<3

3 Replies

Hi the name

Such big question in a way as treatment will depend on your symptoms and the Dr you see.

I have attached a link to the Behcets Society Treatment page so you can have a read of that and also some other factsheets that tell you more about individual treatments for symptoms.

You may find if they give you Steroids to take that your weight will increase along with you appertite.

You could ask your Doctor for some of the nutritional milk drink meal replacements. I have had these when I have been feeling ill with nausea, stomach ulcers etc. The one's I had are called Ensure but there are others and are pretty kind to your system. I also make some basic soups out of fresh veg and whizz it up so it's smooth. You could add potatoes to give it more bulk or add protein powder which you can get from a healthfood shop or some chemists. This goes down without to much ado and is very good for you.

Some people get by with just treatment from topical gels, sprays etc and basic pain killers, whilst others like myself have tried various Immune Suppressants, along with prednisolone but the factsheet will tell you more about these.

Hope you get help soon as not being able to eat can send you on a downward spiral.

Good luck and take care



Thank you for your reply.

I know how insane it sounds, but i cannot wait to finally get a treatment. Ive never been in so much pain in my life. My eye sight is getting worse everyday. Yesterday i actually had a moment for about 5 minutes where i couldnt see a thing. It was terrifying. Im looking really skeletal as well.. which is hard on my relationship at the moment.

Getting to the point where i will take anything!!!

Take care, and i hope you are well xxx

Siobhan x


Andrea is right, it is a big question. None of us have exactly the same symptoms, to the same degree or duration, or the same treatment. What you can expect will also vary, some of us find some meds useful, others can't tolerate them, some docs favour one treatment over another it's a bit of a try it and see situation, particularly when first diagnosed.

I wouldn't worry about asking for an NG tube, there will probably be lots of things to try before you get to that stage, if you ever do.

Take Andrea's suggestions on board and be proactive in your healthcare, it feels good when you can claw back a little control.


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