Does anyone have these same symptoms? Has anyone's condition cleared up? If so what did they do?

Hi,

I am a the wife of a Behcets sufferer. I have just joined this site. It took about 8 year to diagnose and he's suffered about 10 years now.

I wonder if anyone else has his symptoms and if they found any way to combat them?

Complete and total Alopecia - this was the first thing that happened 10 years ago. Has anyone else got this?

Next came Uvitus, Iritus and Vitiligo and mouth ulcers.

Then the fatigue.

Next came vasculitis resulting in a swollen knee and damaged cartilage from it.

Then a year later the same leg had a thrombosis from the vessels swelling and blocking the leg. He was treated wrongly in A and E for quite some time until I got through to the rhumatologist.

So then he went on steroids- still weaning off after over a year.

I looked up azothyoprine and spoke to rhumatologist who then prescribed it. It seemed to be at my suggestion although completely inexperienced and non medical background :/ He is on this as well as colchine.

So apart from the header questions about going into remission, I have so many questions. My husband is reluctant to find out info and I am in the dark. We have 2 small children and I have been worried sick trying to help him.

Sometimes some eye brows grow back but only wispy. Some times he has short white eyelashes...so I know they can grow and the follicle is alive. Sometimes he can go into the sun and his vitilligo is not so bad, other times its more dramatic and he can seriously burn his hands if the skin is in the sun and he has to wear bike gloves....

Lastly he has had a blood test and today they have called him in as his white blood count is high / he has some kind of infection and they said he needs antibiotics straight away. I asked why? What are they for. He does not know nor does he know what any of this means.

Anyone on azothyoprine that could shed light on this for me please?

Love and best wishes

Hannah

[Hidden]

Hi Hannah,

What stands out for me about your post is that your husband is probably seeing a Rgpheumatologist with very little experience of treating Behcets given that you had to suggest the Azathioprine!

I can't comment on the alopecia .but the sensitivity to the sun is caused by Azathioprine, it can cause you to burn badly and increase your risk of skin cancer so factor 50 sunscreen is recommended.

He should be getting regular blood tests whilst on Azathioprine, it's an immunosuppressant and one of the side effects of suppressing the immune system is an increased risk of infection causing the increased white cell count.

Has your husband ever had his Vit D and Vit B12 levels checked as deficiencies in these can go hand in hand with Behcets.

The Behcets Syndrome society and Vasculitis Uk ( Behcets is a form of Vasculitis ) both have websites and helplines where you can go for more information.

Lastly if you stay in England your husband can request a referral to one of the Behcets Centres of Excellence, they are nationally funded so won't cost your GP anything. I will post the link to them. It's not unusual for patients to be in denial about their medical condition but the fact is the best way to manage things and to optimise your health is to become an expert and work with your Consultant to make sure the treatment you receive is optimal.

Best wishes

Keyes

[Hidden in reply to Hidden]

Dear Keyes,

After your comments my husband had his vit b12 and D levels checked and his Vit D was very low! He has a prescription and has started taking it.

Thank you for your help,

Hannah

[Hidden]

The link to the Centres of Excellence

behcets.nhs.uk

[whyzcrazyman]

Hi,behcet's go's into long periods of remission. It will respond well to the right med and that can b the part. Finding the right meds. Some don't work and some will for a little while but then stop. I have had two ten+yr periods of remission following my arthritis attacks. And when it comes back for me it comes back right wear it left off and worse but responds well to the right med.

[m82girlygirl in reply to whyzcrazyman]

Did you do anything that you think helped it go into remission?

[whyzcrazyman in reply to m82girlygirl]

Exercise has been my key and meds when I really need them. Diet for some of it. That helps with sores. And really remission is living with some of it. I don't know if you have a fever or just run a little warm sometimes but I do,like just before the base of the back of my skull starts hurting and the back of my eyes start aching or if I start cooking or painting my arms will go numb . Can't even feel what I'm touching. I'll take some alieve if I need to. But mostly if I can live with I do.

[2106]

Good morning. I would recommend having a vitamin D test, I had bone pain which was horrendous and I had the test and I was very deficient in Vitamin D. The difference it has made is staggering most of my pain has now gone. All the best xx

[whyzcrazyman in reply to 2106]

Thanks, I'm from Phoenix , AZ. Wear there is so much sunshine u over dose on D. And having sincitive skin I learn the best way for me. But now I'm in Washington , just the opposite so I need them for sure . cause I can feel my bones ache sometimes. I take magnesium for that, helps, but D makes sense. It's a hormone u know.

Plur. g

[2106 in reply to whyzcrazyman]

I have found that when I have lots of inflammation this seems to absorb my vitamin D and then this effects my calcium levels as well, I would have a blood test and see if everything is ok.

[Hidden]

Is your husband working? I cannot begin to appreciate how hard things must have been for you.

[Hidden in reply to Hidden]

Hi yes he is doing a lot of hours and a long commute . I can't see how he does it. He nearly lost his leg a year ago. He was trying to work from home but it is not possible. X

[naturalist]

I have been told by my rheumatologist to steer away from antibiotics when possible also do not get the flue or pneumonia injection there are ingredients that can cause harm to behcet's patients I personally stopped taking any prescription meds as they seemed to cause me more symptoms more mouth pain eye problems vein pains among many more I only use a cortisone paste for mouth sores I take a vicoden pain pill a few times a day and a thyroid pill but other than those I do all natural herbs for pain frankensence once per pm on bottom of feet find it at a herbalist and a flower remedy for calmness and sleep along with a p5p vit b and folic acid along with a powdered probiotic twice daily I eat only whole foods and no gluten nothing from a box or a can and I did go to a acupuncturist one year ago who healed a lot of my heat in my body I thought I was dying prior to that treatment I wish you all the best on the trial and error of what works for your husband it is just a night mare until you find the balance to what works best for you. I ate something that has caused me mouth sores and my knee is feeling like it has a break or something it is weak to walk on I do see and feel symptoms come on with certain foods that I am sensitive might be worth having a blood test called tryptase to check histamine levals or a 24 hour urine to check for prostaglandin a protein in urine that causes many problems with the cells in the body really I wish you the best

[m82girlygirl]

there is a forum on food sensitivities I am involved with

rareconnect.org/en/communit...

great group!