Shown: posts 1 to 25 of 28. This is the beginning of the thread.
Posted by SLS on January 27, 2006, at 14:13:52
Mifepristone (RU-486; Corlux; Mifeprex) failure? I'm not sure yet. I took 600mg per day (200 t.i.d.) for eight consecutive days and felt pretty washed-out and fatigued by the end of the treatment course. Studies described that people begin to improve with mifepristone by the end of the week. This was not the case for me. By the time it came time to discontinue the medication, I reported feeling worse and not better. Yet, my scores on the Beck depression scale improved substantially. I cannot rule out the possibility that I won't experience a "sling-shot" effect now that I am no longer taking the drug. I may need several more courses of treatment to precipitate a lasting antidepressant response. However, the FDA limits any one person to only two courses per year. I hope mifepristone gets approved for one of the illnesses it has been shown to treat effectively. It would be nice to be able to go to the local pharmacy and fill a prescription without limitations.
Sorry for not posting. Things have been difficult lately, and I am without motivation and mental energy. I'll try to give more details retrospectively as the days progress.
Thank you all for your support.
- Scoty
Posted by ed_uk on January 27, 2006, at 15:40:37
In reply to Mifepristone failure? Maybe not., posted by SLS on January 27, 2006, at 14:13:52
Hi Scott
I'm sorry to hear things have been so hard lately.
When did you take your last dose of mifepristone?
Ed
Posted by SLS on January 27, 2006, at 18:41:58
In reply to Re: Mifepristone failure? Maybe not. » SLS, posted by ed_uk on January 27, 2006, at 15:40:37
> Hi Scott
>
> I'm sorry to hear things have been so hard lately.
>
> When did you take your last dose of mifepristone?
>
> Ed
Hi Ed.I took my last dose of mifepristone two days ago. Side effects were minimal. Some dry mouth. I also put on 5 lbs, but I'm not sure what to attribute that to.
I hold out some small hope that I'll experience some sort of rebound improvement that will persist.
- Scott
Posted by Phillipa on January 27, 2006, at 19:31:12
In reply to Re: Mifepristone failure? Maybe not., posted by SLS on January 27, 2006, at 18:41:58
Hi Scott I'm so sorry. And I have missed you. Hope your theory holds true for you. I care I really do. Love Phillipa
Posted by gardenergirl on January 27, 2006, at 19:36:23
In reply to Re: Mifepristone failure? Maybe not. » SLS, posted by Phillipa on January 27, 2006, at 19:31:12
It's nice to see you here, Scott. I'm sorry that you're not feeling better. I always admire how you hang in there and keep trying, though. And also how you offer support to others even when you're down.
((((((Scott))))))
gg
Posted by Sarah T. on January 27, 2006, at 21:46:45
In reply to Mifepristone failure? Maybe not., posted by SLS on January 27, 2006, at 14:13:52
Just last night, I was wondering where you were. I imagined you basking in the sun somewhere in the Caribbean.
Were you participating in a study of RU486? Is that how you were able to obtain it? My urinary cortisol levels have been so high for years, regardless of whether I've been on meds or not. I would like to try Mifepristone.
I'm sorry to hear you've been feeling so washed out. Do you think that might be a function of the dose? Must you take the same dose next time? How did they come up with that dose?
S.
Posted by 4WD on January 27, 2006, at 22:21:41
In reply to Mifepristone failure? Maybe not., posted by SLS on January 27, 2006, at 14:13:52
> Mifepristone (RU-486; Corlux; Mifeprex) failure? I'm not sure yet. I took 600mg per day (200 t.i.d.) for eight consecutive days and felt pretty washed-out and fatigued by the end of the treatment course. Studies described that people begin to improve with mifepristone by the end of the week. This was not the case for me. By the time it came time to discontinue the medication, I reported feeling worse and not better. Yet, my scores on the Beck depression scale improved substantially. I cannot rule out the possibility that I won't experience a "sling-shot" effect now that I am no longer taking the drug. I may need several more courses of treatment to precipitate a lasting antidepressant response. However, the FDA limits any one person to only two courses per year. I hope mifepristone gets approved for one of the illnesses it has been shown to treat effectively. It would be nice to be able to go to the local pharmacy and fill a prescription without limitations.
>
> Sorry for not posting. Things have been difficult lately, and I am without motivation and mental energy. I'll try to give more details retrospectively as the days progress.
>
> Thank you all for your support.
>
>
> - ScotySorry to hear it hasn't worked yet, Scott. I'll pray for you that it will have that "slingshot" effect.
Don't feel guilty about not posting for a while. You've been here and offered so much support to so many people for so long - you deserve a break. And we certainly all know that sometimes it's just not possible to get up the mental energy to post or do anything else.
Here's hoping that the FDA will approve the drug as a non experimental treatment and some of us here can also try it. And that you can try it again for as many courses as might help.
Marsha
>
>
Posted by SLS on January 28, 2006, at 6:35:18
In reply to Re: Mifepristone failure? Maybe not. » SLS, posted by Sarah T. on January 27, 2006, at 21:46:45
> Just last night, I was wondering where you were. I imagined you basking in the sun somewhere in the Caribbean.
Then, we were imagining the same thing!
> Were you participating in a study of RU486?No. I was taking it on an open-label basis through a compassionate use program.
> Is that how you were able to obtain it?
I obtained it through the Feminist Majority Foundation once my use of it was approved by the FDA. You can start the process by calling the Feminist Majority Foundation at:
Julianna Zuccaro
703-522-2214
You will also need two forms available on the FDA website. They are #1571 and #1572 applications for IND.http://www.fda.gov/cder/regulatory/applications/Forms.htm
> My urinary cortisol levels have been so high for years, regardless of whether I've been on meds or not. I would like to try Mifepristone.
So far, mifepristone has been used primarily to treat psychotic depression and bipolar depression, ailments known to display high cortisol levels.
http://www.clinicaltrials.gov/show/NCT00043654
> I'm sorry to hear you've been feeling so washed out.
This feeling has been slowly dissipating now that I have discontinued the mifepristone.
> Do you think that might be a function of the dose?
To some degree. Dosages of 50-1200mg were used in the early studies in order to find an optimal effective dosage.
> Must you take the same dose next time? How did they come up with that dose?
600mg is what has been chosen by the FDA to use in their compassionate use protocol. It seems to be a more than adequate dosage.
I am very disappointed that I am not feeling any improvement at all right now.
- Scott
Posted by SLS on January 28, 2006, at 6:40:56
In reply to Re: Mifepristone failure? Maybe not. » SLS, posted by 4WD on January 27, 2006, at 22:21:41
Hi Marsha.
Thanks for the warm sentiments.
> Here's hoping that the FDA will approve the drug as a non experimental treatment and some of us here can also try it. And that you can try it again for as many courses as might help.
For a partial list of the conditions mifepristone might be effective for:
http://www.feminist.org/action/action120f.htm
- Scott
Posted by ed_uk on January 28, 2006, at 7:41:00
In reply to Re: Mifepristone failure? Maybe not., posted by SLS on January 27, 2006, at 18:41:58
Hi Scott
I was wondering whether mifepristone might 'reset' your HPA axis only after the treatment has been discontinued. Just a thought. Perhaps you'll notice some improvement over the next few weeks.
I remember you were thinking of trying topiramate. You also mentioned that you might be interested in trying fluoxetine again at a higher dose. I believe you only took 20mg previously. Any thoughts?
Ed
Posted by Iansf on January 28, 2006, at 17:12:52
In reply to Re: Mifepristone failure? Maybe not., posted by SLS on January 28, 2006, at 6:40:56
Since your scores indicated you're less depressed, is it possible what you're experiencing is not depression but lethargy and discomfort due to the meds? Maybe you're just worn down physically and your body needs to recover and restore energy.
Posted by Sarah T. on January 29, 2006, at 2:11:55
In reply to Re: Mifepristone failure? Maybe not., posted by SLS on January 28, 2006, at 6:35:18
Hi Scott,
Thanks so much for your help.
When do you think you'll try it again? I wish the FDA would let you try it either long enough or often enough to be able to experiment with different doses to see whether that makes a difference.
I'm assuming you got off all other medications when you took Mifepristone??
Sarah
Posted by bipolarspectrum on January 29, 2006, at 2:47:37
In reply to Re: Mifepristone » SLS, posted by Sarah T. on January 29, 2006, at 2:11:55
Scott,
Have you tried:
1. lithium and an atypical at an appreciable dose?
2. Lamictal and an atypical at an appreciable dose
3. lithium and depakote or tegretol
4. Prozac and ZyprexaI'm sure u've been asked these questions before but im just wondering...
bps
Posted by SLS on January 30, 2006, at 7:44:00
In reply to Re: Mifepristone failure? Maybe not. » SLS, posted by ed_uk on January 28, 2006, at 7:41:00
> Hi Scott
>
> I was wondering whether mifepristone might 'reset' your HPA axis only after the treatment has been discontinued.In the very few investigations conducted, patients began to respond during the first week of active treatment.
> Just a thought. Perhaps you'll notice some improvement over the next few weeks.
Tell my brain that! Maybe it will listen to you.
> I remember you were thinking of trying topiramate.
I guess I'll need to place that drug higher on my list. I'm not looking forward to experiencing an exacerbation of my already severely impaired memory and cognition.
> You also mentioned that you might be interested in trying fluoxetine again at a higher dose. I believe you only took 20mg previously.
Thanks for reminding me. Yes - that is true.
> Any thoughts?
No. I feel like I've run out of them.
It might be time for rTMS.
- Scott
Posted by SLS on January 30, 2006, at 7:48:25
In reply to Re: Mifepristone failure? Maybe not., posted by Iansf on January 28, 2006, at 17:12:52
> Since your scores indicated you're less depressed, is it possible what you're experiencing is not depression but lethargy and discomfort due to the meds?
That was my doctor's thought as well. He said I probably felt "washed-out".
> Maybe you're just worn down physically and your body needs to recover and restore energy.
That's what I was hoping. Unfortunately, it seem that I have pretty much ended up where I started. I don't feel as though I gained anything from the treatment.
>:-(
- Scott
Posted by SLS on January 30, 2006, at 7:56:54
In reply to Re: Mifepristone » SLS, posted by Sarah T. on January 29, 2006, at 2:11:55
Hi Sarah.
> Thanks so much for your help.No problem.
> When do you think you'll try it again?I am really on the fence about trying it again. I definitely experienced a rare lifting of depression for about half a day during treatment. However, I don't believe that I have gained anything that would persuade me to pursue another treatment at this time.
> I wish the FDA would let you try it either long enough or often enough to be able to experiment with different doses to see whether that makes a difference.
It would be nice if mifepristone were generally available. It was once placed on the FDA "fast-track" for approval to treat psychotic depression. I don't know where they are at with that.
> I'm assuming you got off all other medications when you took Mifepristone??
No. I continued with all of my regular medications. I didn't hide the fact that I was on Parnate.
My guess is that mifepristone treatment will be very helpful for a subset of people with various affective disorders. Anything that budges my depression must be good for something!
- Scott
Posted by SLS on January 30, 2006, at 8:10:54
In reply to Lets talk about SLS!, posted by bipolarspectrum on January 29, 2006, at 2:47:37
Hi BPS.
:-)
I trust that you are out there making the world a better place for the rest of us.
> Have you tried:
> 1. lithium and an atypical at an appreciable dose?
No. I tried adding lithium to Zyprexa in small amounts. Unfortunately, lithium makes me feel quite a bit worse. I've been on it a handful of times. It doesn't seem to be a good drug for me.
> 2. Lamictal and an atypical at an appreciable dose
Yes.
3. lithium and depakote or tegretol
Nope. I should have some lithium floating around somewhere. Maybe I'll give it another shot in a few weeks if nothing new and exciting materializes.
My doctor gave me a video to watch regarding VNS. I am not convinced enough of its efficacy for treating cases like mine to take the plunge into trying something so physically invasive. The video is being distributed by Cyberonics, the maker of the VNS device.
> 4. Prozac and Zyprexa
That is a good idea. It might be awhile before I go back to an SSRI. I need to catch my breath. My current medication regime leaves me feeling better than nothing at all, and I'm not ready to increase my suffering at this point by coming off of the Parnate. Maybe in a few months. I also take nortriptyline. I introduced to my doctor the idea of substituting Nardil for the Parnate, but he is reluctant to do it. I'm not completely sure why.
> I'm sure u've been asked these questions before but im just wondering...
Thanks for doing a little brainstorming for me. I will keep in mind returning to Prozac at higher dosages while retaining the nortriptyline and using an atypical AP.
It hasn't been a week yet since I took my last dose of mifepristone. I guess there is still some room for hope...
- Scott
Posted by deniseuk on January 30, 2006, at 11:49:52
In reply to Mifepristone failure? Maybe not., posted by SLS on January 27, 2006, at 14:13:52
Hi Scott,
I'm glad you tried the drug, at least you can cross it off your list now.
It's a shame they couldn't do any tests on you to find out if it did have any affect on your Cortisol levels or not or on the system itself. At least that might have given you some guidelines on why it made you worse.
I second what everyone else on this board says, you're one of the most supportive people on the board and always have a kind, encouraging word to say. I really hope you find something that works.
Again, I hate all of this trial and error crap, I just sooooo wish they had some way of diagnosing this illness and monitoring medication to give them some idea of what it's doing when it does work and what it's doing when it makes you feel worse.
All the best.....Denise
Posted by ed_uk on January 30, 2006, at 12:20:27
In reply to Re: Mifepristone failure? Maybe not. » ed_uk, posted by SLS on January 30, 2006, at 7:44:00
Hi Scott
Do I remember that you once took Parnate + imipramine with no symptoms of the serotonin syndrome? If so, what doses did you take?
Ed
Posted by ed_uk on January 30, 2006, at 12:42:59
In reply to Re: Lets talk about SLS! » bipolarspectrum, posted by SLS on January 30, 2006, at 8:10:54
Hi Scott
I don't think you've ever tried Fluanxol. It might be worth a try. You'd have to import it though.
Maprotiline? I don't remember you mentioning trying maprotiline.
And have you ever tried adding tryptophan to your medication? ......starting at a low dose of course due the risk of serotonergic side effects. It's currently approved in the UK under the brand name Optimax.
http://emc.medicines.org.uk/emc/industry/default.asp?page=displaydoc.asp&documentid=1155
Did you read pseudoname's recent posts? He eventually had an excellent response to buprenorphine after careful dose titration. It didn't lift his depression at first, it only worked once the dose was adequate. I thought you might be interested considering that your own experience with opioids was unimpressive......you only took a couple of doses I think, was it hydrocodone? Anyway....
....oh and sibutramine. That's another med you haven't tried.
Requip? Mirapex? Dostinex? I remember you saying that bromocriptine briefly helped. Chairman_MAO seemed to like Dostinex best.
Sinemet? That might help. I wonder..... I don't know of anyone who's tried it for depression. It does interact with MAOIs though :(
Ed
Posted by SLS on February 1, 2006, at 18:24:24
In reply to Re: Mifepristone failure? Maybe not. » SLS, posted by ed_uk on January 30, 2006, at 12:20:27
> Hi Scott
>
> Do I remember that you once took Parnate + imipramine with no symptoms of the serotonin syndrome? If so, what doses did you take?
I really don't remember for sure, but my guess is that the dosage of Parnate was at least 80mg and imipramine 200-300mg. Serotonin syndrome did not occur with this combination. However, serotonin syndrome did occur when the Parnate was switched to Nardil. I take this as more evidence that Nardil is more serotonergic than Parnate.
- Scott
Posted by SLS on February 1, 2006, at 18:26:56
In reply to Mifepristone failure? Maybe not., posted by SLS on January 27, 2006, at 14:13:52
It has been a week since I took my last dose of mifepristone. I don't feel any better now than I did before the treatment. Damn.
- Scott
Posted by Phillipa on February 1, 2006, at 21:08:48
In reply to Re: Mifepristone failure? It looks that way., posted by SLS on February 1, 2006, at 18:26:56
I am truly sorry Scott!!!!! Love Jan
Posted by 4WD on February 1, 2006, at 22:18:18
In reply to Re: Mifepristone failure? It looks that way., posted by SLS on February 1, 2006, at 18:26:56
> It has been a week since I took my last dose of mifepristone. I don't feel any better now than I did before the treatment. Damn.
>
>
> - ScottI'm so sorry, Scott. Will you try the EMSAM patch when it comes out?
Marsha
Posted by TJO on February 2, 2006, at 6:21:53
In reply to Re: Mifepristone failure? It looks that way. » SLS, posted by 4WD on February 1, 2006, at 22:18:18
Hi Scott,
I am so sorry that RU-486 did not work out. I had such high hopes for that medication for you. I am really disappointed. :-(Love
Tam
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