Thalidomide???

shystee999 · Not So Newbie Joined: 17 Apr 2006 Posts: 8

It's been a long time since I've been here.

Thank God thelupus hasnt affected my kidneys (knock on wood). I do have very bad skin lesions. It's been back and forth withpain in my hands and feet because of the sores, etc.

The final option I have is Thalidomide. I've done research and heard the praises of my doctor who treated a patient worse than me who had a miraculous recovery with the medicine.

Is anyone on it or knows someone who is/has? I would like to hear from lupus patients who have had actual experience with thalidomide.

Thanks a lot ad Happy Holidays Smile

MARYCAIN · King of the Jungle Joined: 03 Aug 2006 Posts: 1576

Sorry, I've heard of it being used for lupus, but don't know anyone who has actually used it for that reason. But most of the people I know with lupus are women who are still interested in having children, so it wouldn't be an option for most of them. My oldest brother, who also has lupus, has fairly severe discoid lesions and this was mentioned to him as a treatment option - he decided against it as soon as he heard about the possibility of developing neuropathy. His dermatologist wasn't authorized to prescribe it anyway, so it would have meant finding a different doctor, and that was probably a factor too. But hopefully someone on the forum will have some information for you - I hope it turns out to be a good treatment option for you.

shystee999 · Not So Newbie Joined: 17 Apr 2006 Posts: 8

Thanks a lot for the input.
"I know with lupus are women who are still interested in having children, so it wouldn't be an option for most of them"
That was something I worried about too, but the meds are stopped when a woman makes that decision. Apparently it doesnt affect fertility and once off the meds for a month or so then everything is okay for pregnancy. The plan is to ween me off of it once I amke that decision.

But thanks so much Very Happy

MARYCAIN · King of the Jungle Joined: 03 Aug 2006 Posts: 1576

It's my understanding that you need to be off the drug for at least three months before a pregnancy can be attempted, because of the risk of birth defects. But I guess I should have been more specific about the other issues - the women I personally know with severe lupus skin lesions (as opposed to knowing through message boards or e-mail) are in my local support group, and most of them are very observant Catholics. Since the rhythm birth control they use is based on hormone cycles, it isn't as effective as oral contraceptives or other forms of birth control. So there is a real risk for them of getting pregnant while on the drug. Since the STEPS guidelines require two "effective" forms of birth control and monthly pregnancy tests, it pretty much precludes them from thalidomide. The issue has come up for them with other meds too, but the birth defect risk with most of the other meds is nowhere near as high as with thalidimide. So I guess what I should have said is the women I know are still in a position to get pregnant, so it isn't an option for them. Sorry my original post was confusing. Smile

shystee999 · Not So Newbie Joined: 17 Apr 2006 Posts: 8

No problem, but thanks for the clarification.

littlered · Wolf Joined: 20 Sep 2006 Posts: 549

Wow, am I the only one who freaks out at the word "Thalidomide????" I guess I have too many bad memories related to the word. Not me myself, but people I knew and grew up with.

MARYCAIN · King of the Jungle Joined: 03 Aug 2006 Posts: 1576

No, you aren't the only one - I remember thalidomide babies too, and my mom took DES when she was carrying me. I guess I was lucky, but I was too paranoid to take anything for morning sickness.

Quarterhorsegal · Hamster Joined: 18 Jul 2006 Posts: 81 Location: Illinois

Considering all the drugs that have been pulled from the market lately, and the litigeous nature of our society, I was very supprised to see it come back at all, even restricted the way it is.

MARYCAIN · King of the Jungle Joined: 03 Aug 2006 Posts: 1576

All of us forty and fifty somethings should be grateful to the lady who was in charge of the FDA in the US then - she kept it off the shelves long enough that there were few thalidomide babies born in the US. If it had been accessible earlier, a lot of us might have been exposed, But what I find unconscionable is that the drug is so easily available in many third world countries and thalidomide babies are still being born because the drug manufacturer doesn't spend the money to restrict access to the drug worldwide.

littlered · Wolf Joined: 20 Sep 2006 Posts: 549

Marycain, it's money, honey. Drug companies mainline MONEY. That's why they still sell it whenever and whereever they can. I love them, but I hate em too.