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Posted 1/15/2012 2:33 AM (GMT 0)
My apologies if this has already been discussed.

http://gut.bmj.com/content/50/2/196

In a 2001 study of 10 IBD patients (1 UC, 9 Crohn's) taking 300mg Thalidomide over 12 weeks, disease activity decreased in all patients, while 4 were able to achieve remission (3 discontinued due to sedative side-effects).

So basically 4/9 who completed the 12 week treatment period achieved remission on Thalidomide. I know it's too small a scale to get excited about, but it's surprising that all had decreased disease activity, and 45% is a pretty high remission rate in such a short period of time.

Has anyone had experience with the drug? The prescription process is apparently pretty rigorous after the tragedy that ocurred in the 50s. Anyhow, I hope more research goes into this avenue!
Posted 1/15/2012 2:39 AM (GMT 0)
Isn't that the drug that causes horrific birth defects?

Sue
Posted 1/15/2012 2:43 AM (GMT 0)
Yes, that's the one. It is currently being investigated as a treatment for cancers and a number of autoimmune diseases. Since that tragedy in the 50s, there have been several teratogenic drugs approved for use by women (like Accutane) and I'm sure this could be regulated in a similar manner.

Post Edited (jc_ferrero) : 1/14/2012 7:47:58 PM (GMT-7)

Posted 1/15/2012 2:48 AM (GMT 0)
Thanks - this is a big negative for me.

"Results: Three patients discontinued treatment because of sedative side effects. "
Posted 1/15/2012 3:05 AM (GMT 0)
Yeah, I've been doing a little more research on the side-effects and it seems almost as bad if not worse than Pred... These in particular scared me:

"Thalidomide may cause nerve damage that can be severe and permanent. This damage may occur any time during or after your treatment. Your doctor will examine you regularly to see how thalidomide has affected your nervous system. If you experience any of the following symptoms, call your doctor immediately: numbness, tingling, pain, or burning in the hands and feet."

"Nervous system side effects have included somnolence (36.1% to 37.5%), dizziness (4.2% to 19.4%)

Immunologic side effects have included fever (19.4% to 21.9%), and infection (6.3% to 8.3%).

Other nervous system side effect have included abnormal thinking, amnesia, causalgia, circumoral paresthesia, confusion, hyperesthesia, neuralgia, migraine, abnormal gait, ataxia, decreased libido, decreased reflexes, dementia, dyskinesia, hypalgesia, hyperkinesia, incoordination, meningitis, neurologic disorder, dysesthesia, syncope, loss of consciousness, stupor, seizures, and neuritis. A case of encephalopathy has also been reported."
Posted 1/15/2012 3:16 AM (GMT 0)
Yes, this is a drug that they do use in CD when the standard meds don't work. From what I know it's generally used on males. They don't use it on girls/women of childbearing age due to the risks mentioned above. I don't know if they use it on older women. It's been in use for a while but it won't become very mainstream and I don't know if they'd use it for UC at all.
Posted 1/15/2012 8:35 AM (GMT 0)
Interesting....I remember hearing it in the news maybe last year for use in something....maybe MS?

I can't see using it for UC, however...

It's definitely a med that creates spine-tingling aversion when it's mentioned.

q
Posted 1/15/2012 9:58 PM (GMT 0)
jc_ferrero,

Interesting, but IMO too dangerous.

Why not try LDN - low dose naltrexone which has a high success rate without side effects?

Posted 1/16/2012 12:38 AM (GMT 0)
I've never heard of it but I am always interested in potential treatments. Unforutnately the side effects of this one scare me.
Posted 1/16/2012 3:35 AM (GMT 0)
I came across some more studies which supplement the first one I posted (I'll link you up when I find them again). It looks like Thalidomide is effective for both UC and Crohn's.

But as we've all picked up now, the side-effects can be pretty serious. Maybe Thalidomide might be helpful for someone who can't tolerate anything else?

InSoFla, thank you for introducing me to LDN, I've been reading up on that too and it sounds even better with more mild side-effects. Did you have any problems getting a prescription? I'm desperately looking for alternative treatments while I'm in remission because I know it's not going to last long. My immune system has had enough of Pred now, I can't stand all the infections I've been getting and I want to stay away from it if I can.
Posted 1/16/2012 1:26 PM (GMT 0)
jc_ferrero,

Sure thing. I think that LDN is a great way to go.

Here's more info on it:

Do some research on LDN - low dose naltrexone, you can search this forum as they are several threads on this. I can tell you it works!

Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

https://www.healingwell.com/community/default.aspx?f=38&m=2204683#m2222188, https://www.healingwell.com/community/default.aspx?f=38&m=2129791&p=1

As far as prescription for LDN, you'll have to find an open minded gastro or GP or holistically inclined doctor, osteopath, etc...


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