possible eye involvement advice wanted - Behçet's UK

Behçet's UK

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possible eye involvement advice wanted


I am a 41 yr old male with behcets, I have had gastro intestinal problems and external ulcerations. I recently self-started prednisone due to what I perceived as a possible eye involvement. The Gp is suspecting temporal arteritis. I have not been able to get a confirmed diagnosis due to low esr and crp bloods and no specialist will due a biopsy with the blood counts. I had the blood tests on the third day in of steroid use.

The advice from the ophthalmologist is to stop the steroids and see what happens and re take the blood test one week after steroid stopping. The symptoms I have been experiencing include stabbing pains in both eyes intermediately as if in different spots. Pain behind the eyes and in the temples, pain in the jaw intermediately not necessarily after eating. Numbness on the right side of my face. The right eye pains have also been more predominate. The prednisone did appear to dampen the symptoms, I have taken 50mg a day over the period and am weaning off.

I am seeking advice as the knowledge and treatment of behcets in Australia is limited. Are there more appropriate bloods tests? What are the effects of steroids on the bloods tests ? Is it possible that the symptoms are in line with a facial nerve problem, if so what is the diagnosis direction?

Thankyou in advance for any advice.

6 Replies

Hi andesign,

I can only speak from my experience. After 10 months of bilateral hip and shoulder pain, back pain, weight loss and fatigue I awoke one morning with blurry vision, the worst headache of my life and later that day developed jaw pain on speaking and chewing.

My ESR and CRP were normal as I had been on prednisolone 15mg for 10 days. I had a Temporal Artery Biopsy ( TAB ) which was normal. I had some IV methyl pred infusions and high dose oral prednisolone. It was then thought that I didn't have GCA ( temporal arteritis ) due to my age ( 47 ) and the fact that prednisolone, whilst helping, didn't get rid of my symptoms.

2 years down the line I have a diagnosis of possible Behcets ( I have a 30 yr history of mouth ulcers ), my eye problems have morphed into Blepharospasm and my headaches are thought to be migraines ( very common with Behcets ). I still get jaw claudication and facial pain.

It would be very unusual to get GCA aged 41. Unfortunately a TAB won't tell you definitively as the giant cells cause skip lesions along the temporal artery, they aren't present along the whole length. It is possible to get GCA with normal ESR and CRP. Interestingly I have developed abdominal problems as well and am waiting on a capsule endoscopy to explore my bowel.

Your symptoms don't sound like classic GCA . Usually the eye problems present with visual disturbance ( amaurosis fugax, double or blurry vision ), the jaw pain is claudication ( pain when chewing which is caused by poor blood supply ) and the temples are tender to touch over the artery. Of course I am not saying it definitely isn't!

There is now no doubt that my GCA type symptoms are a Behcets related as it can affect any size of blood vessel.

Are you on any treatment for your Behcets? I do hope you get some answers soon.

Hi andesign,

I can't speak to your particular symptoms, unfortunately, but I did want to respond to your question regarding blood tests. There are NO blood tests for Behcet's, and countless Behcet's patients will confirm that they have seldom if ever had elevated CRP or ESR, even during their worst flares. There's another thread going about this exact issue here: healthunlocked.com/behcetsu...

... And another very helpful discussion can be found here: healthunlocked.com/behcetsu...

It is crucial that your doctors understand this. I highly recommend printing out some research to demonstrate this-- here are a few useful sources on the subject:


(see page 298 under "Laboratory Investigations"-- "Importantly, non-specific markers of inflammation such as C-reactive protein level and erythrocyte sedimentation rate can be normal despite active orogenital, ocular or CNS disease.")




If your doctors are not convinced or won't listen/read what you bring in, then it's definitely time to find more knowledgeable practitioners. I don't know if there are Behcet's organizations specific to Australia that might be able to help you find doctors near you, but I know there are others in Australia in this group, so you can post a question for doctor recommendations in your area.

I hope this helps... Good luck!

Janieg510 in reply to chlovak

It's true there is no specific blood test, but they can find out the level of inflammation in your blood which at least confirms the presence of some sort of autoimmune response. That's how mine was diagnosed. I had gone to the gynecologist for severe pain "below" and the blood test revealed inflammation in my blood. When I mentioned that my eye doctor had said the same thing recently, she diagnosed possible Behcet's and sent me to a specialist.

Hi, I'm in Australia too and fortunately i have an awesome GP. I've had endoscopies both ends due to gastro intestinal problems (reflux and gastritis and rectal bleeding) i think it must be linked to behcets same as the blood in my pee. I had a cystoscopy for that and that showed visible clumps of inflamed blood vessels. I've also had another abnormal pap smear which the GP thinks the inflammatory changes may be due to behcets too. I do feel that it would be good to have access to a specialist who could say for sure whether these are all linked. I do see a rheumatologist so maybe i should pick his brains but i hate feeling like I'm a hypochondriac!

You have very similar symptoms to me. I have jaw pain, that was diagnosed as TMJ I now have a great tailor made mouthguard which has helped massively to relieve the tension in the jaw. I has no clue this was Behcet's related. I am now realising that everything is Behcet's related for me!

I do know that the blood test results will be skewed if you're on cortisone so you have to have it out of your system to really see. That's what my doctor told me.

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