150 ml of azathioprine

[chrissie_lou]

Morning all just got back from the Birmingham school of excellence. ..they av uped my azathioprine to 150 ml now will I start seeing signs of them wrking ...as most of u know im 18 so still quite new to all this ..im a bit worried as im going to lanzoroti in 5 wks .

[billi]

Hi, yes the Azathioprine works well for many patients but you do need to have regular blood tests whilst taking it, I think every month. I am in Spain on holiday just now and what you need to know is that often the first few days you may feel unwell and very tired, it's just the immune system getting used to the different, climate, food and water, so if this happens just REST. I know this sounds harsh for a you t person but you will then be able to enjoy the rest of your holiday!!! Just take your meds and a prescription in case you lose them.

Take care and have a great time.

Hugs

Billi

[CrystalAngel1]

Hi Chrissie-Lou. Personally, the Azathioprine has worked well for me and I am on 150 mg too but it did take 3 months before I really noticed the effects and this is the time scale that the London centre of Excellence gave me - there were perhaps some minor benefits before this and the other treatments (like the Prednisolone) also helped me start to feel better before the aza kicked in so hang on in there. I had weekly blood tests for the first 8 weeks and I'm on monthly blood tests now. Around the time that the Aza really started to work I started to feel very tired but then noticed an improvement with all my symptoms so keep a close eye on everything and most importantly, listen to your body. I'm guessing from your post that you are still troubled by your ulcers? Are you using any other treatments to help? X

[chrissie_lou]

Hia thanks for reply ..im also using prednisone. .xx im just worried about my skin when abroad as I know it more sensitive ..x but I must admit a break mite do me gd ....its mainly mouth n genital ulcers that are getting to me xx

[Zara10]

I have managed to get a local hospital apt on Tuesday, hopefully I will then find out whether I have BS. Have got a lot but not all of symptoms so not sure.

Chrissie we go to Lanzarote regularly and I find I am much better when I am there as, although it can be hot, it is quite windy so I find that helps. Also the doctors over there are very good - make sure you take all your documentation with you and ask for where the free doctors are if you do have to visit one. I have vitiligo so have to use high factor suncream anyway.

[chrissie_lou]

Hi stupid question whats the best factor ...I know I have to watch the sun but I wud like a bit of a tan aswel .lol cant have both I know .x

[klaris]

Hi Chrissie Lou, I've been on aza for about 18 months now - and. like others have said, it does take a good 3 months to kick in. Do make sure you use a very high factor sun screen, as aza can make your skin far more sensitive to the affects of the sun. I use factor 50 - so not a lot of hope for a sun tan with that one, but at least you'll be well protected and can enjoy being outside without worrying.

The aza didn't help my ulcers - so once we knew that, the consultant also put me back on colchicine. And that's really done the trick, so something to consider as you don't want to be on the steroids for too long a stretch if possible. It's lovely that you've got a nice holiday to look forward to

[chrissie_lou in reply to klaris]

Thanku klaris ...I cant have colchicine as it gives me upset tummy ...xx I just want to b ulcer free ....as I dont have any other symptoms they wont diagnose me with bd ...x I do get tierd easy .x

[Michja]

Hi just letting u know I'm on colchicine & find the right dose that doesn't upset ya tummy. Has helped my ulcers everywhere heaps. When I'm about to cycle I do have a break out the week before.

My daughter is on coulchine plus heaps more. The Aza took a good 3 months to work but wasn't enough so ended up on 6 weekly IV Infliximab and that's helped more.

Please be careful in the sun and use sun screen as Aza makes skin sensitive and you can get sun cancers from it. My suggestion, fake tan a healthy way to get a tan. Heaps of good ones out there now. A pain in the bum but you will have beautiful skin when you are ageing not as many wrinkles. Ha xx

[chrissie_lou]

Thanku for ur reply ..x just feeling so down at moment just want to cry all the time xx

[suzannenmike]

Chrissie-lou,

You just go ahead and enjoy your holiday, you lucky girl. Please don't feel too sad, they are trying to help you. All the advice above is spot on, so look in the mirror, give yourself a big smile, and soldier on, as they say. Get the factor 50 at the airport, perhaps you may even find a higher, factor 100.

Big hugs, Suzanne x

[chrissie_lou]

Thanku all .big hugs back xx