Re: Daughter with Behcets

[tamirra]

Morning, not sure if anyone knows, but my daughter suffers with Behcets, and she normally has the flu jab every year, but now she has no immune system would it be safe for her to still have the jab or would it make her too ill, its no good asking her doc as they have never heard of the disease and her next hospital app is Nov which would be to late to ask as the jabs are given beginning of Oct, she was given a direct number to her specialist but she has mislaid it, not sure what to advise her to do, any help appreciated. Thank you.

[RATTER15]

If you don't trust your GP's advice I certainly wouldn't trust the medical advice of any internet site like this.

My advice would be to look for a "Behcet's" online forum or seek help groups that you could get specialist advice from.

[bednobs]

Ring the hospital and ask to speak to the consultant's secretary who will pass on a message. With most auto-immune disease treatment, patients retain some sort of immune system even if it is less than normal. Please don't take this as gospel, but i think the problem comes with "live" vaccinations, and as far as i remember, flu isn't one of them

[tamirra]

Thank you will look on the site, also get her to ring the hospital to speak to specialist secretary. xx

[Sqad]

<<<asking her doc as they have never heard of the disease<<<

Really?

What an indictment on UK medical training if true, however the first question on the Final MB,BS 1956 was:

"Give an account of the signs, symptoms and diagnosis of Behcet´s Disease"

I am getting a bit tired of ABers slagging off the medical profession.

[anneasquith]

quad, correct me if im wrong, but have i not seen some of your posts where you "***" off the health service in this country ?

[anneasquith]

oops .. ***

[anneasquith]

oops again. *** OFF.

[Sqad]

annie....health service and doctors are not necessarily the same thing. One is a massive organization and the other depicts qualified personnel doing their best in often difficult circumstances.

[woofgang]

My personal experience is that there are GP's who are brainless money grubbing Finance Specialists and GP's who are excellent caring practitioners. I wouldn't stay with one who I didn't trust to know about (or research when necessary) any unusual long term condition that I or a family member might have.

[woofgang]

lol at the swear filter. I wonder which AB staff member has such a low opinion of finance specialists?

[filmlady]

Here's a new article for your daughter to give to her doctor, about the effectiveness of vaccines in people with immune issues and inflammatory diseases (like Behcet's):
http://rheumatology.o....keq183.full.pdf+html

I'm NOT medically trained, and her docs are always the best source of info... but the bottom line -- she shouldn't have any LIVE vaccines. And if she's on any immunosuppressant drugs like Imuran or prednisone, then the shot won't work as well on protecting her. Let her docs make the call after they read the article.
Good luck!
Joanne Zeis (Behcet's for 30+ years)
behcetsdisease dot com

[tamirra]

Thank you, Sqad, when we have been to her doctors, there are 3 at our practice and not one of them has heard of the disease we had to tell them what it was and what the symptoms are, even when i have had a question to be answered ive gone to Boots the chemist and asked to speak to the pharmacist, ive asked them the question and they have not a clue what Behcets is either, its ridiculous really that we have nowhere to turn for help. xx

[Sqad]

tamirra are you also asking me to believe that your Consultant at the hospital had never heard of the disorder and that you had to resort to contacting a doctor in Turkey?

[annie0000]

Don't have an answer for you tamirra - so hope that the links you have been given help.

Just wanted to say that everytime I have been to the docs over the last few years (which granted is not often) they always consult google while I am there which I find alittle disconcerting, but I guess it is the modern version of consulting their journals. I am surprised then that your GP wouldn't do the same.

[tamirra]

Not now Sqad, we are under the specialist of Behcets, but we needed to contact her today to ask her a couple of questions,
1, Should the Cyclosporine be working now as it takes 3 months to get into the system, my daughter has another 3 weeks before the 3 months is up, as she is still getting ulcers coming up on her tongue, she has 5 at present, and her throat is so very sore.

2, about the flu jab, she has tried to get in contact with the hospital buts its automated and when she says Dr Delord ( her specialist ) it dosnt know who it is, so we cant get through, so she asked for outpatient dept, and it took her to the same spot and asked who she needed to speak too, so she got nowhere.

[China Doll]

Then ask to speak to the operator and ask the operator to put her through to the PA/secretary of the consultant!

[tamirra]

She did this also, but it kept asking her the name or ext number she wanted, wouldnt put her through.

[China Doll]

Say 'operator'! Or dial 0 for the extension.

[Sqad]

If that is the King´s College Hospital Group, then Google Dr DeLord and it will tell you who is covering for her, so you would be able to tell the telephonist to contact them.