awaiting Behçet’s diagnosis

[Tiffrose]

hi for 8 weeks now I have experienced mouth ulcers 7-8 at a time acne type flares all over my back chest ,legs

Only thing that keeps it at bay is prednisolone, as soon as I drop down dose it all comes back , also have chronic fatigue and joint aches

Tests originally for lupus came back negative but my dermatologist now thinks it could be Behçet disease?

Awaiting blood works for this to come back

What are your thoughts guys ?

[Tyler2007]

Hi,my son had exactly the same signs,an he had red marks an bruises awel,took hosp 4 months to finally get a diagnoses,hope they sort it soon.x

[Juliauk10]

I didn’t think Behçet’s could be diagnosed with a blood test?

[Tiffrose in reply to Juliauk10]

I get what you mean as also doing research seen that you can’t just get diagnosis with a blood test

Everything is pointing in the direction of Behçet’s , think it’s more certain blood works they do can give indicators in confirming diagnosis

[Sherlock11]

Hi are you in the uk? If you are ask to be referred to one of the CoE's ,they have much more experience of diagnosing Behcet's and you are prescribed the most effective treatment.

[Tiffrose in reply to Sherlock11]

I suffer with raynauds also is this something you have ? Just don’t know if there is a connection

[Sherlock11 in reply to Tiffrose]

No I don't have Reynauds but I do have several other autoimmune illnesses.

[sarahlgregs]

Hi,

Sounds like it could be behcets. I get the ulcers, spots and chronic fatigue. Recently started having ankle issue but a consultant at the royal london didn’t think that was related to my behcets.

Good luck keeping it at bay.

Sarah

[gillianTS]

Have you got a history with oral/ genital ulcers, joint aches and fatigue etc prior to the last 8 weeks? Usually a specialist with Behcet's experience will consider all of your history for recurring issues relating to Behcet's. I too was given a lupus diagnosis, then fibromyalgia. Have they taken biopsies of the ulcers?

Other things to be considered include things like vasculitis and rheumatoid arthritis, deficiencies in iron, folate, or vitamin B12, celiac disease, crohn's disease HIV infection, neutropenia or any other immunodeficiencies, neumann's bipolar aphthosis.

A blood test is not possible for Behcet's unfortunately, would have made our lives much easier had this been the case.

Prednisolone is already a treatment for Behcet's and so many other related illnesses. Even withdrawal symptoms of Prednisolone can upset the body causing amongst its symptoms joint aches, fatigue and if your body is stressed then perhaps mouth ulcers too.

Hope you get some answers soon.

[Tiffrose in reply to gillianTS]

Thank you for your reply

It was very sudden onset

But thinking back I have possibly had a couple of genital ulcers in the past but never realised it was that just thought jeans too tight and developed a sore

I’m usually very fit cycling running 4 times a week

Back in may I did the yearly walk of 26 miles for the local hospice and I struggled so much

I normally do this with no issues so I think then my body was telling me something

I have had tests for autoimmune diseases which came back negative

Blood works I’m waiting on currently is HLA b51 and b57 ( think that’s right from my memory)

Thank you again for your advice / Information

[gillianTS]

I am not sure if you have read the section from Behcet's UK concerning HLA, it may be helpful:

behcetsuk.org/wp-content/up...