Remission: So i got diagnosed with this maybe... - Behçet's UK

Behçet's UK

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Remission

davej999 profile image
5 Replies

So i got diagnosed with this maybe 4 years ago now ... at first i had the swores and bruising and repeated tonsillitis, a week in hospital was spent i got given medication to take which included steroids which received for just over 18 months ( I gained a little weight in this period maybe 3 stone) ..... my medication changed repeatedly for a 2 year period leading to the treatment of infusions which worked wonders, but as of march 2013 ive had no symptoms at all besides the tonsillitis which is far from severe... i have just about every body part crossed that the symptoms stay away forever ! im 26 i dont have the time or patience for this thing

Have others had similar periods with little to no symptoms ! ?!

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davej999
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billi profile image
billi

Hi and yes, I have had two long remissions. Since then my symptoms have never been so bad as at the onset. Having said this I did go through 15 years of hell with at one time or another every symptom possible. I just assume it's like a typhoon that tires itself out or my immune system is stronger than they thought. Who knows??? We all react differently some with a few symptoms one after each other continuously and others like myself all in one go for a long period of time. Let's hope you are luck and have a good healthy run!!,

Best wishes

Billi

magician profile image
magician

I was diagnosed in 2007. I had symptoms since 1960's and was not under any treatment until 2007. My symptoms were mouth ulcerations, tonsillitis and pharyngitis, and pains in the arms and legs.

Despite lack of medication, I had periods of remission, one was quite long. I thought it was all gone, but BD eventually decided to attack my eyes, and I had uveitis.

I have been on medication since 2007. There are a few good days, but I do not know if those few good days qualify for remission, as the meds have been non stop. I guess my wishful definition of remission is to go symptom free without meds - wishing for the stars?

Good luck,

m

davej999 profile image
davej999 in reply tomagician

Yeah when originally being diagnosed i think my biggest concern was the chance of my eyes being affected

magician profile image
magician

I wish I could reassure you, but that is not the case.

The next best thing is to be vigilant, fo to the opthalmologist urgently if you sense something wrong with your eyes. Early intervention could mean a huge difference!

Akwarose profile image
Akwarose

I was tentatively diagnosed around the same time. I was hospitalised with severe genital ulcers at the time. The symptoms started with tonsillitis and then this eased and the genital ulcers flared up. This turned out to be my last (so far) bout of genital ulcers but I continued to suffer with severe tonsillitis for a couple of years after that. I had my tonsils out a couple of years ago and now I only get mouth ulcers. These are painful but I can deal with them. Fingers crossed it stays this way!

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