Mouth ulcer treatment

[tamirra]

Hi my daughter was referred to the clinic of exellence in Whitechapel London last week and for the 1st time prescribed doxycycline as a mouth wash, although its an antibiotic these are dispersable in 10ml of water and rinse around the mouth 3 times daily, she has been doing this for 4 days now and she is free of mouth ulcers for the 1st time in years, has anyone else had the same treatment?

[andreafm]

Hi tamirra

No I haven't tried this treatment...sounds good. It is also good to get reports back from people attending the Centres of Excellence...very encouraging.

I am so glad your daughter is getting the help she needs and is feeling better.

Andrea

[tamirra in reply to andreafm]

Thanks andrea, its worth anyone asking to see if they also can try this method, we are pleased with the centre, at long last we have been refered to a hospital/clinic who know what there actually treating. x

[dawnie2750]

hi timirra, my mouth ulcers are the worst part of BD for me..

I was first given colchicine and then hydroxychloroquine. these were great to start with, as the colchicine stops inflamation, I still take these every day..however the ulcers came back steadily, and i was given doxycycline to gargle with..I disperse mine in as little water as possible and gargle as long as i can without gagging (its disgusting)...usually a couple of days and they calm down..

If the ulcers are near the front of the mouth then I use my steroid inhaler and give them a good scoosh and they go away much faster...

Its the flu symptoms that come with the sore throat and ulcers that is the debilitating part...your knackered all the time...I have a good specialist that does not take any crap from my gp's, as you probably know they dont much like 'experimental' treatment!!!!!!

I wish I had been diagnosed earlier, and im happy when I hear of a young person who has so they dont suffer as I did, and get the proper treatment..

[tamirra]

Hi dawnie, my daughter has been on numerous medications and non of which really took all the symptoms away, but we are pleased that prof Fortune has started her on new treatment, she has also been given an anesthetic gel for the genital ulcers which also helps to stop scaring. Take care Jayne. x

[picklepops]

Hi tamirra

I too am under prof fortune at whitechaple, I used to see her at St Thomas's but have recently transferred.

I suffered with the most awful mouth ulcers up to 22 at a time in the mouth. I was only diagnosed with BD a year ago and I am now 59 !!! Have suffered with it for all these years undiagnosed.

I was put on doxyclycline, betnesol and nystatin to mix up with 10mls of water and within 2 weeks my ulcers started to go :o) I get the odd one or two if i visit the dentist or have eaten a crisp that has scratched my mouth but it has been so wonderful to be able to eat again!

I also take colchicine and azathiaprine and many other meds like heart pills and pain killers but I am so pleased with how my life have changed. Of course I still have my flareups and find the tiredness hard to live with but am so pleased to be under the 3 proffessors at whitechaple.

I agree with dawnie am so pleased your daughter has been given the diagnoses so young so she can get the treatment she needs now and not go through life thinking she is going mad with all the different symptoms that come with BD.

xxx

[tamirra]

Thank you Picklepops, it took about 3/4 years for my daughter to get a diagnoses as her symptoms started when she was 17 with what we and all the doctors thought was tonsillitis but later found out it was quite different to that and she spent 5 weeks in hospital seriously ill with blood posioning etc, but we now hope things are looking up and we can see light at the end of the tunnel for once in years. x x