just a quick update

[chrissie_lou]

im 18 years old .have sufferd with mouth /genital ulcers for some years now ...im under the birmingham behcets clinic at city hospital ..the other wk i posted i had my worse ever out break ..so i had 2 infusion of methylpredisolone......then 5 days after that go back to disguss my medication ...they have now put me on 50mg of azathioprine and 5 mg of prednisolone .....i have to go for blood test every wk ....any advise will be welcum ....and i must say i think this site is great ,and people are so helpful xxx big hugs

[billi]

Hi Chrissie, and welcome to the site. The meds you have been given are about the norm for your symptoms and for the start of BD. The blood tests will be for the Azathioprine. You will learn that although we all have the same disease we have differing symptoms, medications and tolerances to both. It is very good that you are at a Centre of Excellence.....you are in safe hands , I'm sure.

For tips and advice it would be useful to know the actual symptoms you are having just now.

Take care

Hugs and Smiles

Billi

[Dan_NY]

I am also on azathioprine (25mg), but have not been told by doctors I need monitoring every week for this. I do not want to steal this thread but if someone can confirm i need weekly tests for this drug, please please say so. My sides have been hurting some and I wonder if my kidneys are telling me this is not OK. ChrissyLou.. I think you just helped me a TON.

Sorry to hear of your bad ulcers. Hang in there. For me, the ulcers have mostly gone away. I went through flares and had no medicine so I am happy to hear you have some relief. There were times I could not talk for 3-4 days, as it hurt too much. I also did not eat for days at a time. Doctors kept telling me I had Herpes (though tests were negative) and go home and dont mess around so much. I recall a straw helped to drink some fluids. It mostly bypassed the sores this way. I also recall eating mushroom soup from a can. It required zero chewing and went down easier than anything else. It also required no energy to prepare. It got me through some bad times... Maybe you dont care for mushroom soup, but maybe chicken broth through a straw? Something like this. Best of luck to you...

Dan (across the pond)

[sian35 in reply to Dan_NY]

Hi Dan

I think it is every 2 weeks for a while and then every month - I had mine done by a local Gp. I developed a liver problem so came off azothyoprine.

If you have a pain in your side then do get bloods checked including liver function asap.

Kind regards,

Sarah

[chrissie_lou]

Hi dan ..im realy sure u have to av bloods dun every wk for 6 wks then every month .x

[billi]

Hi it was at least 15 years ago when I had Azathioprine but I know for certain I went for blood tests and that after about 8 months that was the reason they took me off the drug so if you see this Dan ask your GP.

Billi

[CrystalAngel1]

Hi Chrissie-Lou, I am pleased that you have found the site helpful. I'm really glad that you are being looked after by a COE and that you have a treatment plan sorted. I am 31 now but had my first Behcet's symptoms when I was 12 and was only diagnosed a couple of years ago. I wasn't managed very well but last year I went to the London COE and they have been amazing. I was already taking Prednisolone and was needing larger and larger doses but still not getting good control of my disease and so I started on Azathioprine in January. When you get diagnosed with Behcet's and start on these meds there is a lot to take in but I know the clinic will look after you well. I have had my bloods done weekly for the first 8 weeks and have now gone on to monthly bloods. I'm sure the clinic have explained it but the Azathioprine does take a while to have it's full effect and to be honest, I'm only just starting to see the benefits of it now. I did have some side effects to start off with too (nausea and vomiting) which can be common and if you do get any - there are lots of previous threads on this with tips on how to manage them (obviously I really hope you don't get any!) I just wondered if you have any other problems with your Behcet's or if it's predominantly mouth and genital ulcers? I hope you start to feel better soon.

[Hidden]

Welcome to the site. You are very lucky to be being looked after at the Birmingham Centre of Excellence. I am trying to get a referral to the London CofE.

I hope all goes well with your treatment plan. Any questions you have or problems you come across, someone on this site will most likely have experienced the same thing. Hugs C x x

[chrissie_lou]

Hi all thanku for post I find them all very helpfull ...I have mouth n genital ulcers ..but wen I have a realy bad outbreak .I get very fatigue an head aches...but my out breaks are becoming more server ..so hopefully these tablets will work soonxx

[runninggirl08]

Welcome to this site...I'm currently on a ...we do blood tests like every six weeks...I hope u find relief chrissie