Thalidomide for Crohn's

[nbguy]

Does anybody know of anyone who has taken Thalidomide for Crohn's? Yes, it's the same morning-sickness drug that caused many birth defects in the 1950's and 60's. My GI has prescribed it for me. I'm a 61 year old male. I was on Humira for 2 1/2 years, got prostate cancer, got rid of it (so far) surgically a year ago, and now the Crohn's is acting up. The doctor and I are reluctant to start Humira again at this time (because of the cancer), and there has been some evidence that Thalidomide can work. Problem is, it has some pretty big side effects listed (in addition to the the pregnancy warnings). Anything you may have heard would be helpful. Thanks

 

[gmm]

i was on it for about 3 weeks but had the sore heads with it , so stopped as the consultant said, if that happened,didnt make any difference as i was on pred at the same time and was the only thing that would work, there have been a few folks that have got on well with it though

 

[scotishcanadian]

I was on it for a little over a year, and went into remission with it. On the downside, I developed bi-polar disorder for a year as a side effect from it. I no longer have bi-polar disorder because they took me off of the thalomid, but I was in remission when I was on it. Be careful though, because bi-polar is not listed in the official side effects list of the drug due to the fact that only a couple of people have developed it and it's very rare. My psych doctor had to dig for months to find the couple of cases where bi-polar occurred as a result of taking the thalomid.

 

[nbguy]

Interesting. Did the bi-polar sneak up on you? How long was it before you became aware of it? They list depression as a side effect. We're you depressed? Do you have any meds that you can currently recommend out of the group you are taking now? Thanks for the info.

 

[Mark63]

My brother was treated with this for Multiple Myloma, nothing to do with Crohn's, but he has been left with permanent nerve damage to his hands and feet. This is a recognised side effect of treatment with this drug and appears to be related to the total dose received. He had little choice as his disease is a killer. Three years on he's still here, but with problems and an uncertain future.

Mark

 

[scotishcanadian]

Interesting. Did the bi-polar sneak up on you? How long was it before you became aware of it? They list depression as a side effect. We're you depressed? Do you have any meds that you can currently recommend out of the group you are taking now? Thanks for the info.

I was depressed for about a week long a couple of months prior to experiencing mania and having to hospitalized because we didn't know what it was. The bi-polar definitely snuck up on me because the only other history of mental illness in my family is my grandmother who has depression. Once they took me off of the thalomid though, and it had a chance to get out of my system, I was fine. They pulled me off of all of my bi-polar drugs and I've been fine ever since. I'm currently taking part in a stem cell trial that seems to be working so far for my crohn's. I would really reccomend any of the drugs I've tried. They're good drugs; they just didn't work on me.

 

[nbguy]

I'm sorry to hear about your brother. I am starting on the lowest dose, 50 mg per day. Do you know what dose he has been on?

Gus

 

[nbguy]

Thanks again for that good information. I'm going to go ahead and take my first pill tonight. Fingers crossed. Glad to hear the stem cell trial is working so far. Good luck!

 

[Mark63]

Hi Gus,

Sorry, don't know about the dose, I did ask him some time ago when I saw that this med was being use for Crohn's but he never came back to me. From what little I've read it seems that the nerve issue is related to the total dose taken over time. It may not be an issue for some people at all. Metronadizole (Flagyl) a common antibiotic used in the treatment Crohn's can have a similar effect, which is why it is not normally recommended for long term use.

Hope you get on ok.

Mark

 

[scotishcanadian]

Best of luck Gus! Seriously, if it works for you, it's a great drug. :] It just wasn't for me. I never developed any nerve damage while on it, but those dang nerve conduction tests that I had to have regularly done were painful as all get out!

Mark, when I was on flagyl I actually developed an allergy to it where I got weak legs and severe, incapacitating headaches whenever I took it. Isn't it odd how some medicines are great for certain people, and others are disastrous? The human body is a crazy thing.

 

[nbguy]

I hadn't given the nerve tests much thought, but I will now! Just kidding. I guess if the tests don't hurt, that means you're in trouble. Thanks again for all that good info. You too, Mark.