Behcets disease

[tamirra]

Morning, can anyone possibly answer my question, why has my daughters immune system been knocked out with Cyclosporin for her Behcets and not boosted? x

[bednobs]

because that's what cyclosporine does, it lowers the immune system

[bednobs]

to explain a bit more, it's an auto immune disease, so the treatment to make it better is to lower the immune response/system. It's doing its job

[tamirra]

Yes i know that, but why do they do they knock it out and not boost it, as when people are ill they build up the imminity to make them well not weaken it. x

[tamirra]

I understand now, its because of the type of disease she has, and her body is attacking the immune system, so if she has no mmune system her own body cant attack it, but she is never well now tho, it did go into remission for years, ut for some reason she cant get herself well, so do you know if there is anything he can do/take that would make her feel well. x

[bednobs]

if the cyclosporine is not working for her, she needs to (after giving it a good go) see her consultant for their advice.

it's actually the other way round - her immune system is attacking her body, therefore the immune system is lowered as a treatment.

of course, it could just be that the disease is more active at the moment, or getting worse, hence her never feeling well. Maybe she needs a combination of drugs, or a higher dose

[Sqad]

tamirra.......you have got on my t1ts for the past six months to the extent that I refuse to partake in any question that you ask and I have the feeling that a lot of people also feel the same way.

You have told us that British doctors do not know how to diagnose the disease, to such an extent that one of your posts asked for the address of a Turkish doctor in order to get advice. You keep on dribbling about your daughters condition and your own problems continually on AB and I feel it is insulting to the doctors, that you are asking ABers for their advice...............for God´s sake woman what do you think AB has to offer?

Clearly you have no idea why your daughter is being prescribed immuno-suppresive drugs, but let me assure you that your Doctors do, even though you seek help from AB.

[tamirra]

They have highered her dose from 100mg to 150mg but still she is suffering wth mouth ulcers which is stopping her eating, she can only eat icecream, you seem to know a fair bit about the disease, can you give me any ideas of the sort of medication she may need as the hospital, in my eyes dont seem to be doing enough. xx

[anneasquith]

sqad, thats a bit harsh and very rude to tamirra, may it be that tamirra does not fully understand her daughters condition very well , but is extremely concearned for her wellbeing, tamirra , have you tried to contact any support organisations who may be able to answer your questions.

[tamirra]

Dont worry Anne, maybe he has never had a daughter neary die in front of his eyes, and yes its true the doctors didnt have any ideas what was wrong with my daughter even consultants from kings college hospital didnt have a damn clue when they came to see her at her worst while laying in a bed in intensive care, but im sorry for being such a pest and getting on everyones t1ts!!!

[ummmm]

I think Sqads point is...why are you asking ABers when you were saying the Doctors don't even know.

ABers are likely to know far less if anything at all....

Speak to your Doctors and ask them why..

[Sqad]

anne......oh! and by the way, you answered tamirra´s post concerning her sinus washout saying that you had seen one done.

However when she asked you directly and by name, if you would describe it to her, you failed to reply.......I wonder why?

Perhaps you missed her post?

[tamirra]

Dont worry people wont be asking anything else, so you can all get on with your lives without the pain in the ar2e being involved

[ummmm]

Don't be a drama queen. Sqad has a valid point. You were inquiring about Turkish doctors as UK ones didn't know. So how are ABers meant to know?

[redcrx]

you say it went into remission for years? I thought she had only just been diagnosed, but how did they get it to go into remission before?

as ummmm and sqad (in his own way) have said, you are really going to struggle to find anyone on AB with all the answers, though sqad has tried in the past.

[anneasquith]

what is your point sqad. i did answer a question re sinus washing, that i had seen the procedure and yes i did miss the follow on question, but what has that to do with tamirri^s question to day ?

[Sqad]

anne...it was "by the way"..."en passant"........the association of tamirra´s thread and your usual informative answers, just reminded me.....that´s all.

However, I await you answer re sinus washout, with interest.

[anneasquith]

tamirra, im sorry your daughter is ill, and most parents would share your concern, but please try to access a support group who im sure would be of assistance to you.

[tamirra]

Yes Anne i have joined many of the groups but i was under the impression that this was a questions and answers group where you could ask any question that you needed answering, how wrong was i, yes there are some really nice helpful people on here, and also there i quite a few of the opposite too.

[ummmm]

Tamirra...have you asked the doctors this question?

[tamirra]

To Red> her veyr 1st illness was when she was 17 she is now 23, they didnt know what it was when she was 17 so it was an undiagnosed illness, she was on high doses of steroids as a last result to try to get her back on her feet, it worked, then it went into remission for 4 years and only recently came to light again, and it was only with this outbreak that it was finally given a name