One of the doctors I was seeing 2 yrs ago when PA came out that she used Enbrel for RSD told me that her doctor retracted that statement & said she was using it for Arthritis only, was because at that time atleast, Enbrel was not used for off label purposes at all. There was talk of putting me on Enbrel except that I, personally, didn't have any of the specific Diagnosis' that Enbrel was being prescribed for. And if you didn't have one of the diagnosis' that it was legally prescribed for, you could not get & use the drug Enbrel.

This doctor I saw at that time had been involved with a major study of using Enbrel for RSD at the University of SF Hospital or whatever hospital it is in SF that she had been at. I can't remember as she is no longer in my doctors office & I did only see her twice. But anyway, if she doesn't want to be a spokes person then that is that.

I agree with GnP we need to quit beating a dead horse.

And I agree with herthat the upcoming events in LA are a very good thing. Please keep us up to date with it all ok? And I didn't know you knew all those different celebrities including PA.

DebbyV
ps I watched AI last week & I didn't see any enebriation in her at all.....

I have to confess that I tried to hijack this thread. Paula Abdul was obviously stoned and I wanted to talk about why.

I think the only reasonable explanation is that she has RSD; realized her announcement could kill her career (it could have), so she denied it, and she found about ketamine. I brought this up before, and everyone agreed I was wrong. I didn’t push it because I didn’t see how it was relevant to anyone here. Now I see that it is:

People I care about are wasting their money and their hope when they try ketamine. I can’t prove anything, but I can present enough evidence to convince someone that I’m right. I hope someone asks for that evidence.

Before I talk about that, however, I want to say a few things about me; because I claim to be an expert in drugs and drug behavior, so I need to tell you why you should listen to me. I also claim to have been honest in every post I wrote here or at BT.

Those who remember me from BT know I revealed things about my life that they probably wouldn’t. Whether people believe I’m honest will determine whether you listen to me.

The State of Kansas broke some rules in order to hire me as a psychiatric social worker just 18 months after I earned my BSW. Until then, a BSW had to have 5 years of related experience. I am a court-qualified expert in psychology and substance abuse. My superiors recognized me as best qualified.

It’s ok to ask why you should agree with a social worker who disagrees with the entire medical community about the cause of this disease: I tried to write in a way that showed I knew what I was talking about, and everyone agreed they couldn’t understand what I was saying, I’ll try another way.

But now I’m saying that I know what I’m talking about when it comes to drugs and the penalties of RSD, so when I say I know why K didn’t work for most people here, I’m giving you the professional opinion of an expert. You can choose to believe that or not.

I can prove that researchers weighted the largest “study” on RSD and ketamine, in favor of ketamine. I can prove it, but I’m not going to deliver another Vic Lecture: I’ll present my facts to anyone who sincerely demands them. If no one asks, I can tell myself that I tried.

I can explain why I’m convinced that Paula Abdul is taking larger than approved dosages of ketamine. In addition to being a qualified expert, I also have 20 years of experience using and abusing drugs and alcohol, and hanging around with people like me. I have seen every stoned state imaginable.

I have never seen a drug that could sustain that sort of euphoria, and I can’t imagine why she would use K unless it worked for her. She knows the price she’ll pay.

In another post I said I would trade the rest of my life for 3 years of euphoric activity instead of pain and disability. I would. I think I would have refused it in 1979 (when I was first disabled), but after looking back on 28 years of my life, that would have been a mistake. But I was never offered that choice, so it doesn't matter.

No one here will get to make that choice. You have to have money and status to get a doc who’s willing to lie about dosages, so it doesn’t matter. It does matter that the experts have cooked the books in order to get people to pay for therapies that often fail. It matters because you will be wasting your money (if insurance will pay for it, you I,m ok with wasting their money).

All you have to do is look around here: I think there may be two people here who report long-term remission after ketamine; the rest don’t seem to differ from those of us who never tried it. It doesn’t work for most people and it probably won’t work for you.

So, if you want evidence proving the experts cooked the books, ask for it and I’ll provide it. If anyone wants to encourage others to try it, I’ll let someone else ask questions. I would just like to see a real discussion about ketamine; not just an impressive looking report that no one actually studies…Vic

:)Wan't you who mentioned "role model' Kathi but was mentioned in a previous post in another thread about her.
Sorry if it seems I was quoting you.:hug:

Cheers Tayla

Hi,
 

I don't think it matters what drug she is on. We most likely will never know. Most of us agree that she acts drugged up at all times.

As far as denying she has RSD to save her career, if that were the case then we'd have all of the other actors denying what they have such as Michael J. Fox until he could hide it no more. Why hide it for that reason if you can still get by with being on TV?

As far as Ketamine, I would think it will be like any other drug out there for RSD, it's a hit and miss. Where it helps one person, it won't help another. Same with the side effects, where one person might have them, the others might not. We just all try what we feel we need to to get better.

It goes back to getting the disease calmed down to where a person can manage without being suicidal or getting them to be able to do some of the things they feel they want to do.

I don't know if they ever will find a cure for it but if they could just find a faster way to get people into remission, that would be a blessing. I believe blocks are the closest thing to that at this time.

Ada

Hi Ada,

I believe that Ketamine infusions could become an integral part of remission of RSD/CRPS in the US as it has become in Australia where it has been widely used as a treatment since the mid 90's.
It is hard to assess it's efficacy in a country which is still not using it to it's potential.
I will quote some statistics from Australia which are available for anyone who wishes to check them which say that in a control group there was complete relief for 76%, partial relief for 18% and no relief for 6%.
To me these are impressive results from a drug that has little in the way of side effects if used in a controlled, supervised system.The half life is quite short with the drug being excreted very quickly by our bodies so sustained hallucinations are very unlikely unless the level is too high and not being regulated to patient tolerance.
I attend a pain clinic which gives regular Ketamine Infusions for 5-7 days every 6 months , sometimes sooner if required to top up and whilst there have been just a handful of people who have been "cured" as in having no pain, there are several who find they can live a very acceptable existance with remarkably reduced pain. At 3 years 33% of patients remained pain free.
To me any time with less or reduced pain is a bonus. To be able to fall asleep and stay asleep for hours rather than minutes is something I always look forward to.
I haven't been cured as such but have now lost contact with many who have who no longer need to attend our clinic because they have been.

As a nurse we have been using Ketamine as an anaesthetic drug for over 30 years. It is still the anaesthetic of choice for many patients who need anaesthetising for short periods of time as it has a lower incidence of respiratory suppression and depression and there are few side effects after.

..Unfortunately the illicit use of Ketamine is around with some people liking the disassociative feeling they get. Somewhat similar to an "out of body" experience but this is a short lived experience unless your hit can be backed up with another .
I have had a general anaesthetic with Ketamine too and experienced what is known as the "k hole" and whilst it is a wild ride there is certainly nothing pleasant or euphoric about it.

I would love this treatment in combination with blocks, mirror and graded motor imagery to be available worldwide and for all the doctors of the world to be knowledgable enough to diagnose this condition and immediately refer people onto those Pain teams which can manage their pain.

Wishing you well
Love Taylla:hug:

Hi Tayla,
 

Those are high statistics.

You are right. We do need Drs. that could follow a protocol of several different things to help a person get into remission. I have had ketamine injections, lidocaine and mericaine also. My PCP used the protocol of blocks, triggerpoint injections, PT and hot water therapy. When I first started fighting my RSD and Fibro I would do anything to get it under control. It was a major struggle but we found if we followed a protocol and stuck with it, then we did better. We just didn't give up.

Why is the US not using it like they are where you live? What are the reasons. I most likely have read why at one time or another but I can't keep anything in my head for long.

I think the one of the main things in dealing with RSD is finding a Dr. that is willing to be in it for the long haul and knows enough about it to try and get it into remission. There aren't a lot of them that do even in Pain Management. They give up after awhile if the case is too hard, also the patient gets frustrated and gives up after awhile. It sure isn't an overnight thing to get it into remission.

Ada

situation fixed with the PM 's Debbie and other's - sorry :)
now bear in mind - whatever one's drug of choice , in certain circles, that drug does not have to be obtained through legal channels(doctors) if that is not the way you want to do it - money can buy "high end connections " too -
and now I am done on the topic
Again - Good times are ahead for us !!!!!!!!!

Peace
GnP