Has anyone been prescribed Alpha TNF, if so how have they found it?

[tamirra]

[Dundee1963]

Hi Tamirra

I have taking interferon A for three years,It has kept my eyes quiet.I would say for me the main side effects have been fatigue.

TNF which I think includes: Infliximab, etancept,.adalinumab. Information is available on the Behcet's Society website under patient information.

[tamirra]

Thank you i will check it out. x

[Dundee1963 in reply to tamirra]

Hi Tamirra sorry if this is tad personal, I was just wondering if you are being offered these treatments.

[tamirra]

Thats ok dont worry, its actually my daughter who suffers not me and no not as yet we are waiting for an appointment for St Barts Behcet`s clinic, she is currently on Cellcept which isnt helping with the ulcers, headaches and fatique.

[Dundee1963]

Good luck at St Barts.

[tamirra in reply to Dundee1963]

Thank you, you been there??

[Dundee1963 in reply to tamirra]

Hi Tamirra ,no i attend the eye clinic in Aberdeen.Although I have other Behcet's symptoms my eyes are my main concern.In theory interferon Alpha should help with all symptoms.I certainly have no more problems with ulcers.

[tamirra in reply to Dundee1963]

Didnt realise you lived there sorry, my daughter is light sensitive and has to wear sunglasses all the time, she has slight inflamation in the eyes but nothing to worry about they say, her main worry is ulcers, this morning she has woken with a huge ulcer down below and we are not sure what to do, she cant sit or stand for long cos of the pain, she is waiting to have a tonsilectomy as she gets tonsillitis every month, she was in hospital 3 weeks ago with it, but purely because our hospital gave her antibiotics that she should not have had with her cellcept and she had breathing problems, great hospitals we have :(. Hope your days is ok. x

[stormie in reply to tamirra]

I have Behcets, I get tonsillitis every month - does your daughter. Have they said it is linked. They wont take mine out, fear or the risks.

[SuenMike]

Bless your poor daughter's heart. I also used to suffer from that kind of ulcer. I found that the best treatment was to give it a puffs of a steroid inhaler usually used by asthmatics. It may be a good idea to visit your GP about this. You do not say how old your daughter is, but despite the embarrassment, it would be worth it. Good luck. I hope you soon get a solution.

[tamirra in reply to SuenMike]

Hi, she is 24, 25 in January, she has tried numerous treatments for the ulcers also the steroid inhaler, but nothing seems to help, the only thing she gets relief from is IV morphine but hospitals are so reluctant to use it, when she was last admitted into hospital about 3 weeks ago they just gave her paracetamol which is absolutly useless they just dont understand what the pain is like it drives me insane, her little daughter has seen so much in her short life it kills me, my heart goes out to her, so i spoil her rotten lol. x

[SuenMike]

How difficult is for your daughter to get an emergency appointment with her consultant? Is she visiting more then one hospital, so they do not tie up her medical notes? I feel for her, as I as more or less told I was a hypocondriac until a genital ulcer migrated down to my thigh, then the medics thought something was wrong. Before that, on a visit to my GP I was told I was visiting him too often, so I didn't go to a doctor for over two years. It was even suggested that I had genital herpes!!! There is still a lot of ignorance about Behcet's disease. I really hope there can be an answer soon for your poor daughter. x