Thalidomide for Behcet's

[tamirra]

Hi, has anyone on here had any experience with taking Thalidomide for Behcet's disease, if so did it help any? Thanks

[Buenchico]

This clinical trial might be of interest to you:
http://www.ncbi.nlm.n...nrheumd00500-0044.pdf

Chris

[tamirra]

Thank you for the link, its very interesting i will be printing if off and taking it to hospital next week. Thanks again

[sophie_1003]

Also- there was an article about this in Pick Me Up last week, a young girl had Behcets and was eventually prescribed thalidomide but she did experience the side effect of the thalidomide killing off nerves in her feet. She had to stop taking it until her feet got better and the symptoms of behcets returned while she wasn't taking the thalidomide.

[wiggal]

sophie you beat me to it! I was just about to say about the story in Pick me up :-)

[sophie_1003]

haha! too speedy for you!

[tamirra]

Oh really, so it does help put it into remission but with serious side effects, ive also read its not prescribed to adults of child bearing age, my daughter is 22 so she will have to opt out of this one, so we battle on! Thank you for your help. x

[Jemisa]

Don't you remember reading and seeing clips about the terrible terrible things Thalidimide did to unborn babies in the 60s??
I personally would never contimplate taking them, never.For whatever reason.
jem

[tamirra]

Yes i do remember, but they were taking it to control morning sickness while pregnant, my daughter isnt pregnant, i understand your concerns thats why im asking for peoples experiences. Thanks anyway.

[bednobs]

i have a friend with this illness. She is of child bearing age and takes thalidomide. It is working really really well for her. She is not in a relationship, and is not one to sleep around so the birth defects thing does not bother her. I used to work as a haematology nurse, where thalidomide was used for a wider range of disorders, so it feels pretty normal to me (i myself was on some tablets where you are not supposed to get pregnant (untill i got pregnant!)) However, as you have seen from previous replies, thalidomide has a very bad name, and you/she will have to be prepared for reactions like the above when people don't really understand that the symptoms of an illness can be so bad that you want to try, or follow your doctors recommendations.
I also take steroids and will never forget my sister saying something to me like "steroids are so bad and have so many side effects that I would never ever take them". I was so upset because at the time they were the only medication that allowed me to function, and she was in the lucky position of not having to choose because she was well! people can say things without thinking sometimes!

[tamirra]

Thank you bednobs, your friend with Behcets is there anyway she would e-mail me as i would really like to contact her and keep in touch with someone in the same position as my daughter, i would so much appreciate it. xx

[Jemisa]

"People can say things without thinking" This is what Bednobs said about me I presume, What I said was because of thinking about it. You tammira asked for peoples opinions and I gave you mine. It doesn't mean to say its right or wrong.
I have deep sympathy for your daughter with Behcets disease.
I too bednobs have had to fight for my life with the big C so I know what suffering is all about too.

jem

[tamirra]

Hi Jemisa, of course your welcome to give your point of view, but i was really wanting to know of the actual experiences people had while taking the drug, which ive yet to come across. x

[bednobs]

well jem, you are lucky then aren't you that your doctors didn't say to you "to treat this cancer, the best treatment will be thalidomide" cause you would have been in even more of a sticky situation then.
I was actually talking about my sister saying things without thinking - ie her comment about steroids which to be honest really kicked me when i was down. it's not like i wanted to take them but in order to be able to get up in the morning, at the time i had no choice, hence i felt hurt by what she was saying, when she was in the very lucky position of not having to choose between her "never take them" stance and feeling so unwell. I'm not trying to infer that anyone has "suffered" more than you

[tamirra]

Please dont argue over this, its not worth it, all i wanted was some input, my daughter gets very ill with this chronic disease and we thought this may give her a little quality to her life, as she has a little toddler to deal with too and when she gets so bad that she has to crawl on all fours to get to her daughter it breaks my heart and i cant do anything to help, ive cried for many hours over this and will do for many months to come until the right medication can be found. Bednobs do you think your friend would talk to me about her illness?

[bednobs]

i have emailed her tamirra
sorry for arguing miss :)

[tamirra]

LOL thank you so much for that, if she is willing to email me how will i get my email address to her? xx Your so kind x

[bednobs]

if she replies and says yes i will leave you a post :)

[tamirra]

Thank you bednobs. Also thank you Eddie for the link, im already in contact with a lady on there forum who has the disease as does her husband, they are the only married couple in the world who are married and both suffer with the same disease. xx

[tamirra]

Whoops, obviously married if there married, getting tired now lol. xx