I was just wanting to know people's expeirences on thalidomide as I have been on it since january although it is keeping the crohn's controlled most of the time I am struggling to do much on it as I am constantly left tired and feel shaky and weak if im on my feet for a while. Just feel really frustrated as really need to go back to work but cant seem to do anything on this medictaion

Donna x

Hi Donna,
This is a new one on me, I`ve never heard of it being used for the treatment of Crohns but if it gets you in remission good for you . I would suggest you ask your doc if he could prescribe something to combat the tiredness rather than change a medication that works for you
Hope this helps,
Delilah.  

Hey Donna,

I was on this for about a week, left me with headaches from hell.  The doc's said that it would give you mad headaches or it would work.  I did not like been on them at all. I was a bit like your self, feeling shaky and just feeling like crap in general.  But if its working then thats good, but you can only go on like that for so long.  What else have you tried?

Neil

I have tried every medication available at my local hospital but nothing works as i have become immune to everything so untill I get my stem cell transplant I have to stay on this but im really struggling because although the crohns is controlled most of the time I cant do much else just feel like a zombie all the time

Donna

Did you get the go ahead for the SCT? Where are you having it done? The reason why I ask, is I have 2 GI Consultants at different hospitals. My local hospital was going to put me down to Nottingham to speak to the doc's there but my other doc is putting me for another op. Just interested

Take care

Neil

I met with Professor Hawkey and his team in Edinburgh as they are starting the treatment there now but that was on the 19th of march was told it takes 3 weeks to decide the second part but here i am almost 8 weeks later with no word.

Donna