Hi I'm new to this. Spent 4 weeks in hospital ... - Behçet's UK
Hi I'm new to this. Spent 4 weeks in hospital before they said I had behcets syndrome. I'm having real bad joint aches n in a lot of pain
Hi Paulbert,
Welcome to this group. Not good that you are suffering, but good you were able to get a diagnosis.
Hi Paulbert, all the best this sight has wonderful information to help you through. It's helped me understand & recognise the importance of the correct medication.
Hi,
Firstly welcome to the forum. It has been really helpful to me and hope it will be for you too.
Not good to hear you are suffering, but you have made the first hurdle by getting a diagnosis.
Hope you start to feel better soon. C x x
Hia thanks everyone yer it's my knee that's given up on me can't get out bed on my own n need help getting to loo n washing not good. I've got appointment to se specalist in two weeks. At moment I'm on steroids but have cut dwn now to 2 pill 10mg used to be on 40mg. I'm also on methatraxite take 4 of them every fri makes me really ill tho. Hope everyone else is ok. Is there any one from East Sussex? X
The oral methotrexate made me really ill. I found I tolerated it better when I had someone give me an injection instead once a week. Do you have any medical people in your friends or family group who could help? (Nurses, medical assistants, etc). My grandma and sister, who are nurses, helped with my weekly injections. Also. Zofran (*generic is Odansetron, I think) helps a lot for nausea without drowsiness. However, even with the best help (all as I have shared I did), my methotrexate injection days were definitely my "down" days for the week. Unfortunately, I just had to deal with it and schedule accordingly. I had a one year old child the last time I was on it so that was not very easy (to schedule down time for me). It did bring about a full remission my 1st bad flare, if that makes you feel any better about dealing with the side effects (though it is different for everyone, & that took about a year). My 2nd and 3rd flares were not responsive to Methotrexate, and now I wish I could go back to the ease if those days. (Ha ha). I am on Remicade now, which doesn't have very bad side effects for me, but is not working all that well either. Welcome, and I hope you feel better.
