Doctors have suggested I may have BD but are unsure,I have inflammation behind my eye eye in both and have been given prendisolone for 1year

I am putting weight on and it is affecting my confidence. What other treatments are available without these side effects

?

[AusBehcets]

Hi jackie,

Sorry you are going through this. I guess when it comes to eyes you really have to go with the experts. I know what it is like though, as I start putting on weight within a week of starting even short burst Pred treatment. Then it is so hard to lose that weight.

Are they running any more tests to exclude other causes of your eye problems?

Are there any medications or supplements you are on that could be making your eyes worse?

In my case I had to stop taking Gabapentin & Vit B 12. They caused me an episode behind my eyes, of popping & pressure. Seemed vascular, but no-one can explain it to me. I had severe Dry Eye symptoms too & symptoms of eyeball shrinkage like atrophy, but temporary like dehydration. Also had temporary ptosis & my lids would stick to my eyeballs. I'm seeing another Prof soon (Immuno/Rheum/Ophthal) to talk about ?Behcet's, ?Lupus, ? Lyme Diease, ? Ank. Spondyl, ?allergies etc etc.

Fish Oil does have an anti-inflammatory effect on eyes & was recommended by my optometrist & Opthalmologist.

My new GP has found I have a chronic Mycoplasma infection & I'm on Doxycycline, Nilstat, Prodophilus, Zinc Picolinate, Vit C, Fish Oil, fresh food diet of no reactive foods. Also no sugar, no potato, no cereals, no bread...so practically Gluten Free. I have Coeliac genetics (by testing) but not Coeliac Disease ( by serology & biopsy). My Dr says I'm probably still sensitive to gluten. I seem to be breathing better off it.

My eyes have improved a lot on this regime. They still get dry at times, but not as bad.

I've had no repeat of the pressure & popping at the back of my eyes, since I stopped B12 & Gabapentin.

[goodlife]

Hi Jackie, I know the weight gain is hard to deal with but I have found that by following the slimming world plan I am never hungry and I have managed to lose a stone in 8 weeks. I don't think it is purely the drugs that make us put on weight, I went from being very active to being housebound for several months.

To be honest now that around a year has passed since my first bout of being very unwell I am now able to deal with the weight gain. sadly, I don't think there is a quick fix to either the health issues or weight gain, but I would not recommend going against your Doc's advice....your vision is a precious thing. Welcome to the site, we are a nice friendly bunch of people. There are others who will come online and have more specific eye related advice, I only had Uveitis in one eye and it wasn't too bad.

You are very welcome to send a message to me if there is anything you wish to be more private. Love Jill x

[Hidden in reply to goodlife]

Hi Jill, thank you for your kind words, just trying to keep as active as I can but it is really affecting my confidence. I just wish the doctors could be more specific and treat me for a certain condition instead of just filling me full of steroids and waiting to see what happens.

[goodlife]

Jackie I've been in the same boat as you. Losing independence and mobility is bad enough but to become a fat bloater is the final straw! lol. If Behcet is being suggested you could ask your GP to refer you to one of the 3 centres of excellence, Birmingham, Liverpool or London. Click on the Behcet Society icon top right of page and you will find their addresses. I only have a probable Behcet diagnosis myself and its very difficult to accept such a limited life with no full explanation/diagnosis isn't it? Jill x