Thalidomide?

[Mehita]

Lots of articles about thalidomide lately. Does anyone have experience with this or had input from their GI?

 

[Farmwife]

Can you post a link or paste and copy on some info. I haven't heard of that yet.

THANKS

 

[my little penguin]

Summary
Background
Anti-tumour necrosis factor-α antibodies are useful for the treatment of refractory Crohn's disease and ulcerative colitis. Thalidomide is another agent with tumour necrosis factor-α suppressive properties.

Aim
To investigate the long-term efficacy and safety of thalidomide in a group of children and young adults with refractory inflammatory bowel disease.

Methods
Twenty-eight patients with refractory moderate-severe inflammatory bowel disease (19 Crohn's disease, 9 ulcerative colitis) received thalidomide 1.5–2.5 mg/kg/day. Patients were assessed at baseline, at weeks 2, 4, 8 and 12, and then every 12 weeks by patient's diary, physical examinations, laboratory analyses and scoring on activity indexes. Primary outcomes were: (i) efficacy in inducing remission; and (ii) efficacy in maintaining remission.

Results
remission was achieved with thalidomide in 21 of 28 (75%) patients (17 with Crohn's disease, 4 with ulcerative colitis). Mean duration of remission was 34.5 months. Sixteen of 20 (80%) patients suspended steroids. Reversible neuropathy occurred in seven of 28 (25%) patients, but only with cumulative doses over 28 g. Other side effects requiring thalidomide suspension were vertigo/somnolence (one of 28), and agitation/hallucinations (one of 28).

Conclusions
Thalidomide seems to be effective in inducing long-term remission in children and adolescents with intractable inflammatory bowel disease. Neuropathy is the main adverse effect, but appears to be cumulative dose-dependent, thus allowing long-term remission before drug suspension.

From
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.2006.03211.x/full

 

[Mehita]

What are your thoughts MLP?

Here's another article...
http://www.emaxhealth.com/1275/thalidomide-good-crohns-disease-children
http://www.medscape.com/viewarticle/815047

 

[Sudsy]

Here's another:
http://www.crohnsforum.com/showthread.php?t=58254&highlight=thalidomide

No thoughts, aside from that I would make darn sure my daughter was using 2 (maybe even three) forms of birth control.

 

[kimmidwife]

I read this a few weeks ago and my first thought was how scarey to even think this drug is being experimented with after all the problems it caused. Then my second thought was would I be willing to out my daughter on it if it works? I don't know. I second the three forms of birth control if I let her take it ever.

 

[Brian'sMom]

What is "refractory" crohns disease?

 

[kimmidwife]

Refractory means resistant. They are talking about disease resistant to other treatments.

 

[DustyKat]

No experience with it and no input from GI’s, just what I have read about it.

I think if one of my kids was in the refractory groups and this presented as a possibility for remission I would take it. It’s side effects in the general sense are certainly no worse than what our kids face now.

I wholeheartedly agree with the risks posed of it being used in females of child bearing age and the added precautions required but would the risks of Thalidomide in this age group be significantly different to those of Methotrexate?

Dusty. xxx

 

[crohnsinct]

^^ tru dat Dusty. O's doc warned me about the discussion and addition of birth control due to her Methotrexate use down the road...ARGH! I am hoping we can just drop the MTX rather than add another drug.

 

[kimmidwife]

Dustykat,
I have to answer yes and no to that. Methotrexate causes miscarriage, thalidomide causes birth defects but those babies survive so it is a hard call which is worse. they are both bad no question on that. I agree though it is something to be very careful with in women of childbearing age.

 

[xmdmom]

The study said

Contraception was mandatory for female participants of childbearing potential (two concomitant methods) and pregnancy testing was carried out monthly.

I'm still surprised any doctor would give it to a girl/woman who could get pregnant. It sounds promising for boys.

 

[Brian'sMom]

My mom took DES (Diethylstilbestrol) when she was pregnant with me because she was spotting. It was supposed to be a miracle drug that saved babies. When I had a healthy baby born at 18 weeks...and he died... we found out after that the drug had caused defects in my reproductive system. Since she only took it for a short time I was only left with an incompetent cervix and misformed lining in there so I have to be careful with pap smears in having them checked more further than other women. I've also had 4 miscarriages. I can say, they both stink!!!!! Its hard to lose a baby. Have trouble getting pregnant. Etc. But all us Mom's know that. But i guess like Dusty said, see there are many drugs that cause this I'm sure. And they don't usually know til waaay down the road. My mom forgot she even took that drug until I had problems. I happened to have a doctor that asked me to have her check her records. Otherwise she'd have never remembered.

 

[DustyKat]

Unfortunately Methotrexate has the potential to cause both miscarriage and/or birth defects. It is genotoxic so not only affects eggs but sperm as well, males are under the same precautions as females if contemplating starting a family.

 

[polly13]

I think I would let her try it (if it was still my choice) I think the unfortunate thing about this drug is that when it becomes an issue re the devadting side effects it will be no longer my choice. The side effects are avoidable by not getting pregnant so if somebody is really strict about birth control then should be ok. Big worry for me would be from about 17 - 25.