Thalidomide for ulcers

[Meggy7791]

Is anyone still being prescribed Thalidomide for their ulceration? If so, where in the UK? Is this being prescribed down in London at the centre of Excellence? I would be really interested to know.

[carole22]

my daughter has just been prescribed thalidomide, she is under prof moots at the liverpool centre of exellence

[don5766 in reply to carole22]

I was prescribed it in Scotland but London centre of excellence did not want me taking it as once nerve damage is caused there is not going back that's it damaged for good! I was givin ciclorsporin instead!!

[carole22 in reply to don5766]

my daughter is having nerve conduction tests run this week before she starts the drug, she has had most drugs and reacted to lots, sometimes severely , cyclosporin didnt work for her, i hope it helps you Don, the only drug that seems to have helped was given as an emergency when her eye sight was threatened, she had campath and it saved her sight

[Meggy7791 in reply to don5766]

Thanks for your reply. I have been on Thalidomide for over 10 years in norfolk. Prof Scott retired and the new consultant have specific pathways to follow and Thalidomide doesn't appear. Yes, it is an old drug but I have been monitored every 6 months with nerve conduction tests. Initially they fell but then plateaued for 8/9 years and I was only taking 1 tablet every 3 days. I hardly had any ulceration anywhere. Since April I seem to only have 2 weeks without. These are huge and are causing all sorts of problems. The Neurophysicist could not see a problem with continuing. I fully understand that the side effects are not reversible but with careful monitoring these shouldn't be a problem. I ve now tried a variety of meds to no avail. I hope you have success with ciclosporin.

[Julesbob]

Hi, I live in Cornwall and was prescribed Thalidomide , primarily for my rheumatic pain but was also told it would help with ulcers. I have to say though that I reacted very badly to it, I had palpitations, had pins and needles in my arms and legs, my finger tips went completely numb and my feet swelled so much I could get any shoes on, my blood pressure was quite high and I normally have a low one. So I was taken off, it was a great shame as my consultant has had very impressive results ( his words) with other patients.

[suzannenmike]

This was one of the first medications I was offered. Unfortunately, it made me very sick and I got numb hands and feet like Julesbob, so I was taken off them.

[Meggy7791 in reply to suzannenmike]

Thanks for your comment. Where in the UK do you live?

[suzannenmike in reply to Meggy7791]

Hello Meggy,

I live in Hertfordshire, and my consultant is Dr David Jayne at Addenbrookes Hospital Cambridge.

[Meggy7791 in reply to suzannenmike]

Hi I had your message regarding Thalidomide. Can you tell me when Dr Jayne prescribed this for you? Was it recently or a few years ago. I'm trying to find the nearest hospital to me. I'd really appreciate your response. Many thanks.

[suzannenmike in reply to Meggy7791]

Hi Meggy. I was prescribed Thalidomide in 1998.

[Meggy7791 in reply to suzannenmike]

Thanks for replying. I think they've changed their policy on Thalidomide but will give it a go! Probably will have to trudge up to Liverpool to see Prof. Moots.

[Meggy7791]

Hi. That's really interesting as my consultant said that addenbrookes followed the same pathways as the Norfolk and Norwich and wouldn't prescribe Thalidomide! We're you prescribed it recently?

[djmilton]

Hi, I'm on Thalidomide, and have been for the last 12 years. I'm from Aberdeen, Scotland. I have the nerve damage, but it has stabilised over the last few years. My neurologist has tried to get me to come off the drug but we've always ended up agreeing to disagree, as he doesn't like the nerve damage being caused by this drug, but like your self, it's the only drug that works wonders for my ulceration, so unless he's able to find a drug similar and without the nerve damage side effect, I'm not willing to change medications. It's always going to be a clash of opinions with this drug?!

[conniemcall]

Hi I was on thalidomide for 15 yes but had to stop due to serious side effects. It worked wonders for me and I'm struggling with ineffective treatments!! I would love it being prescribed again!!

[Meggy7791]

I'm sorry to hear that. I imagine you had peripheral nerve problems? I was fortunate and after a number of years reduced the dosage and my nerve function remained stable . I'm taking mycophenolate and colchicine, now, which isn't working at all. So I'm trying to find the nearest place to me, I live in Norfolk, who still prescribes.