just a vent...
 

on thursday, i had my fifth "subanesthetic ketamine" infusion, the dose having reached 155 mg over a 2 hour period. all to no avail, these five treatments. i have one more scheduled for may 2, and then fully expect the doctor to call it quits.

i am a pretty balanced person, all things considered, but i feel like i am finally coming unhinged.

it's been 9 years of constant pain and blahblahblah (i don't intend to preach to the choir -- or bore it with needless detail!). i did not realize how much hope i had sunk into this ketamine adventure and while i knew intellectually there was a chance it would not "work," apparently my psyche didn't get the message.

so i plan to give in to the blues for a few days -- i've already been crabby going on 4 days, and that's about enough. then i have to tackle the enormous question: what now?

i already know the answer. there's been no stone unturned, really -- the problem is a familiar one -- my diagnosis was much delayed, hence my treatment(s) really started too late. and trying ketamine after 9 years and expecting it to work? why, i guess that was downright silly.


note: if you are considering outpt subanesthetic ketamine, don't be let down by my experience... because i am certainly not the type of case that is likely to benefit -- it was just something i had to try, for my own peace of mind. (peace of mind? well, i guess that will be something to look forward to!) from what i am told, when it works, it is a remarkable thing...

Hi Prof,

I don't want to rain on your downer parade but maybe you still have a chance?

It took 10 years of misdiagnosis's , 4 cervical surgeries, a lumbar laminectomy , trigger point injections, etc before I finally received the correct diagnosis.

I did the 5 day inpatient first followed by boosters of of 200mg at 2 wk intervals twice, then at 1 month, then at 2 months, then another 5 day out patient at 6 months.

I truly noticed the largest improvement after the first 2 week booster after my inpatient. There was a period of time where even my doctor thought I was not making any progress on the ketamine and that was while receiving 65mg per hour constantly for 5 days.

Sooo....long story short, sometimes the effect can really come to you afterward so PLEASE don't give up and do get rest and try to stay stress free for a while after your treeatment.

Best wishes with it,
Dawn

I don't know what the difference is in effectiveness is for the for subanesethetic vs. IV ketamine treatments. And for a one day at a time at that. Also, your dose at 155 mg is fairly low considering you've been sick for 9 years.

What is cool is that you have access to ketamine. Try to get the best protocol you can. Don't give up...keep persisting until you get what you need. There are many research articles on ketamine available at RSDSA.org. Generally, in the US, the sickest patients go for a 5 day inpatient high dose ketamine IV infusion. I started with a 10 day outpatient low dose IV ketamine infusion. In my first year I had a total of 38 infusions. My current protocol is 2 days in a row, every 4 weeks, 200 mgs each day.

I am better than I was, but I still have RSD....I need Migraine meds for my head and have to be careful how I use my arms. but I don't take the heavy duty narcotics very often any more.

Good luck, and don't ever give up!!! Sandy

I am sorry and can understand how you are feeling. Did the doctor who does the ketamine explain why you have not benefited? What he thinks the next step would be?
Sorry I can't offer more. I can relate because I don't respond to treatments/meds in positive way but I try to think that it just takes 1 doctor or treatment to make a difference.

I would have 2 suggestions.
One, make sure you are not on pain meds when undergoing ketamine treatments as they can interfere with the glia that you are trying to shut down.
Two, I would say that 2 hr infusions just might not be enough. Inpatient therapy would involve 5 straight days of ketamine and from my research that is where most people have success.

My daughter had many out patient without success. One inpatient with no success and then one inpatient with NO pain meds with total success.

Ask your doctor to consider talking to Schwartzman, Getson or Kirkpatrick for inpatient infusion rates.

Hi Dawn,

Not to worry, my "downer parade" can survive anything you throw at it!

My adventure with CRPS began in May 2002. For self-serving reasons, the medical community I was dealing with failed to diagnose my "classic presentation" for CRPS for over 19 months. Anyway, I now have a great group of doctors and nurses -- but we are all a bit discouraged.

In terms of ketamine, It's been a six week process thus far without any improvement whatsoever. I will certainly see the treatments through to the end of this second cycle -- but I already had to twist the arm of the doctor, as he was ready to stop after the initial cycle of three infusions. (I know subanesthetic ketamine is being given according to various protocols -- and don't want to argue with anyone about what is best. The reality, for me, is that I am accessing what is available to me by the most reputable person and institution around.)

I have CRPS (both types 1 and 2) in both arms, both legs, and in the lower part of my face. That pain sometimes has to compete with the pain of avascular necrosis, which is present in all my major joints and most of the smaller ones, too. To top that off, I am in my third year of having infected shoulder prostheses/osteomyelitis. I am, let's say, a bit worn down!

So yeah, I'll be patient, and as stress free as I can manage... but I also need to be realistic. My CRPS is severe, I'm wheelchair bound (more from AVN than from CRPS), and the state of the "science" involved in treating CRPS doesn't do much to bolster my optimism. I still run into people who want to parrot nonsense -- and these are well-educated medical professionals. Ah, but that is for another day.

Okay, so this is me... slinking off to meditate on the possibility that the ketamine might still kick in...

Prof

Hi Sandy,

Thanks for the encouragement, and I am glad that ketamine has given you so much relief!

Subanesthetic and i.v. treatments are synonymous, as far as I know. By that I mean -- not anesthetic (the coma protocol) and not oral. Outpatient intravenous infusion.

I am assuming that you had positive results, though, somewhat early on... and based on that, you chose to continue.

I would surely do the same were I getting even a hint of relief. But I am not. Just as it would have been ludicrous to continue getting sympathetic blocks when they never worked, I won't pour more money, time, and effort into something that is not effective for me. Like everyone, too, I have to think of the people in my life who rearrange their schedules and activities in order to help me. It's not fair to them, either.

About four years ago, I chose to cut my narcotic intake by about 70% and have stayed on the same doses since then. Well, that's not true -- I have lowered my methadone dose an additional 25% but it's a secret! I also take "drug holidays" every 4-6 weeks -- again, it's top secret. heh!

I learned a long time ago that meds will only help so much. I don't have any problem taking them for the relief they afford, but I never expect them to take me to some alternate reality where I have no pain.

Probably what I will do next is that old pain management trick of the "lateral shift"! Moving from the long-acting opiate I've been on to another, but at a lower equivalent dose.

I've followed the ketamine craze since its inception and have read everything I can find. I wish the science were much, much stronger than it is. CRPS is the only disease/syndrome I know of that is treated almost entirely by protocols developed from anecdotal evidence, and sustained by what is little more than scientistic gossip. It's infuriating... but, as the wise-*** kids love to say, it is what it is!

Thanks for your kindness and I hope you continue to improve.

Prof

The doctor told me at the outset that I was the worst case of CRPS that they'd undertaken to treat and that with my other ongoing medical issues, it might not work.

But then... the next two times I saw him, the man was absolutely revitalized and actually used the M-word over and over -- it was "miracle" this and "miraculous" that!

The nursing supervisor that oversees the ketamine treatments, though, was dubious from the beginning, saying that they had not had much success treating people who had more than 1-2 limbs involved. Both arms and both legs are severely impacted in my case -- as well as my face (who knew *that* was going to happen!).

They are not jerking me around on purpose, but that's what it amounts to... in order to keep hope alive, they rely on stories where the results were almost curative... and then to temper hope with reality, they wax poetic about how awful my case is. It's funny, I suppose, or will be, one day.

Each infusion has been at a higher dose. Next Monday, I believe the dose will be at 180 mg (infused in 1.5 tp 2 hours). They are fond of saying that everyone has "their dose" -- so maybe that will be "my dose"!

Thanks for writing... it does help to speak with people who know what I am talking about. More and more, I find that, in my everyday life, even with doctors, I have less and less to say. I mean, let's face it -- if a person with CRPS *really* tries to explain the disease? We sound like maniacs!

"Well, Doctor, you know that feeling when your skin has been set on fire with some accelerant like kerosene and then someone is removing it strip by strip with a pair of sharp tweezers? What? Oh, you don't!" It's a riot!

Be well,
Prof

my doctor contends that the protocol in use at his hospital is having better results than those of the Big 3.

like i said to someone else above, i am not here to argue the merits of protocols, as i am limited -- for reasons not really pertinent to the discussion -- to *this* protocol.

it's great that some have the resources to have treatment after treatment in the absence of positive results. still, even if i had unlimited resources, i doubt that i would continue down a path without benefit of some sort of proof that the path was beneficial to me.

it is not a lack of faith, hope, persistence, or any other positive attribute that some people seem to want to impune -- it's the rockbed of pragmatism that is driving my decisions!

well, that, and the excellent medical team that i have -- i am trying ketamine infusions against their advice. they are being supportive now that my decision is made and being acted upon -- but never wanted me to go this route.

i was told to wait, wait, wait -- until i had some resolution of the osteomyelitis we cannot seem to conquer, mostly. my crps has not really had much of a chance to improve these last 4-5 years, as i have had to have 11 major orthopedic surgeries due to avascular necrosis and then ensuing infections. at present, the organism plaguing my bones refuses to grow in the laboratory... and i have had over 42 weeks of i.v. antibiotic therapy. now i am on almost nonstop oral abx. and still, my last wbc was 16,000, my sed rate over 100 and my CRP was obscene. but i couldn't put off treating the pain in my arms and legs any longer.

i am very happy for your daughter and hope she continues to improve!
prof

180 mgs at one time is still a low dose. And one day at a time is still a short period of time.

Higher doses over a longer period time might work.

Sorry your opinion can't have more of an impact on the guys running the show. Why not call Dr. Schwartzman in Philly at Drexel? It will take a while to get in to see him. Google Robert J Schwartzman Chief of Neurology at Drexel University and you will find his phone number.

For more information on treatments for RSD, go to the RSDSA.org website. There is more you can try. Don't ever give up trying to feel better.. !! xoxox Sandy