I am curious about the experience of people - especially those with chronic (> 3-4 years) RSD/CRPS - who have had what I understand to be Dr. Schwartzman's current ketamine protocol: ten 4-hour outpatient infusions over two weeks, with 200 mg. of ketamine delivered through the infusion process, along with other medications.

Specifically:

1. How much and for how how long did it help with your pain;

2. Same question with respect to movement disorders;

3. Same question with respect to any perceived CRPS-related neurocognitive issues; and

4. How often are you returning for booster infusions and how well do they seem to work?

There is a decent chance my pain doctor's hospital is going to allow him to use this protocol in Los Angeles, and if so, he and his hospital would be accepting insurance reimbursement as payment in full, less whatever co-pays might apply. (Which I believe would be a first for LA.)

So inquiring minds want to know. Thanks.

Mike

Hey Mike -

I hurt myself in Nov 2006, so I just passed the 4 year mark. I wasn't diagnosed until June of 2008.

I started out my ketamine treatments with the 10 day protocol, but at less than 200 mg. per day. I didn't get up to that dose until my 26th or 27th infusion. I believe I was at 150 mg. most of the time, but I'm not certain because my doc's practice was to not disclose the dose to his patients. I weighed about 120 lbs or so when I started the infusions, and lost some weight during the the first few months.

I began my treatments with Dr. Getson in South Jersey, who followed Dr. S's protocol. I did the 10 days (with the weekend off), then 2 days a week for a month, then I did 2 days every other week for a month. Then I went to 2 days a month. In late July I was ordered by the RI WC Court to begin treatments here in the State, with a local doc who had just been licensed to perform the infusions, and I began to get my infusions once every 3 weeks. My doc has just decided to start trying 2 days in a row once every 4 weeks. I will begin that in December. Since April 19th I've had 28 infusions.

My pain has improved quite a bit. It is not perfect. But I am off the morphine (Fentanyl) and rarely take any oxycodone. My biggest complaint has to do with migraines, which I never had before I had RSD. I have other drugs that I use now to try to control my headaches.

I still notice weather changes, but nowhere like before. And I have to be careful how I use my arms and will always have trouble lying down on my head. Generally, I'd say that ketamine has reduced these issues about 80% for me, such that my pain is usually about 20% of what it was. And sometimes, on really nice days, my pain can be at zero. Right now I'm close to 3 weeks out from my last infusion, by the time 4 weeks rolls around I might be down to a 50-60% reduction in pain. I can't remember ever going back to where I was before I started the treatments. It's all been GOOD!!

I don't have much of a tremor or other movement disorder, so I can't respond to your second question.

Neurocognitive - I think I am slowly improving since I started the ketamine. I was the worst about a year and a half ago - I could barely have a conversation because I couldn't remember the name of ANYTHING!!! I'm getting better. Reducing the meds helped. Feeling better so that I could move around more also was a big help - I am a big time walker. Going back to work has been great for my brain. But I do continue to experience memory loss issues, etc. I am not like I was before. But everyday that goes by I think I get better and better.

After the 10 day protocol, my first month consisted of 2 days every week. And after that it was 2 days every other week. Then we started to spread them out because I was doing well.

I've tried many other treatments - tons of different meds, 8 stellate ganglion blocks, a lumbar block, 8 lidocaine infusions, and the results from the ketamine infusions were profoundly more effective than all of them put together. I still take Cymbalta, Topamax, Clonodine, Skelaxin, Ambien and Fiorcet. And I put Lidoderm patches and Voltaren gel on my sore spots.

I sincerely wish you well. It is truly awesome that more docs are offering this treatment. Please let me know if you have any more questions.

XOXOX Sandy

Sandy -

Thank you for that marvelously complete answer. And wow! 28 infusions since April is much more than I would have guessed. But then you don't know what was exact the dosage. (FYI: that wouldn't fly in many jurisdictions, including California, where the patient is generally entitled to as much information regarding his or her care as s/he wants: otherwise it's not "informed consent.")

I guess the big question that comes to mind pertains to your headaches, where I seem to recall them being directly associated with ketamine. But you suggest - as I read it - that the migraines came to town with the CRPS and not with its treatment. Is that correct?

And on a more prosaic level, do you recall the gauge of the needle that was used with your IV? I'm hoping this can be done through a 22, because due to neurogenic vasoconstriction I haven't been able tolerate a 20 since at least 2004, and the thought of being in a "dissociative state" for the better part of two weeks with a PICC line implanted in my arm 24/7 lacks a certain aesthetic appeal, to put it mildly.

Thanks again.

Mike

Dear Mike,

My migraines are from my RSD. Getson did an occipital block in May which helped a lot. My RSD spread from my right shoulder (brachial plexus) UP instead of down - it went into my cervical spine and the back of my head. My PT gave me some stretches to do which I don't do as often as I should. And the pain gets worse as my infusions start to wear off.

My doctor in RI told me what my dose was with Getson when he got my records. He said Getson told him he generally doesn't disclose dosing because patients tend to compare notes and get upset when they discover that their dose might not be the same as someone else's. I guess if I persisted in wanting to know what I was getting he would have probably told me. I don't know if Dr. S. has the same policy or not. The 150 mg worked for me - I didn't need as much at first, I was about 10 - 15 lbs lighter than I am now and hadn't built up any exposure to it yet. Now the 200 mg. works well for me, too.

I get a line placed in my hand for my infusions - Getson used a smaller needle than my RI doc uses (he has more experience with this stuff!!). Because I am active I still have decent veins. I saw some central lines at Getson's in NJ (there were always more than one of us at a time), but no picc lines. I don't think they use them for ketamine. I'm not sure how big the needles are, but you can request a child's size if you like to minimize the chance of spreading. I've had a lot of pain with my left hand since I've so many needle sticks in it (the blocks, lidocaine infusions, and now all the ketamine). The smaller the better. Ketamine is also very easy on the veins.

Take care, Sandy

I get mine a bit differently....

I see Dr. Leverone from Los Angeles...

I do one 4 hour infusion.

the first one, i recieved 1000mg. had 3 months full remission

then the 2nd i recieved 2000 mg. had 6 months remission

the 3rd and 4th i've recieved about 1500-1750 mg, and gotten 6 months full remission.

i'm about to have another on the 30th.

Sandy,
Thank you so much for the info. I am heading to the Mayo Clinic at the end of this month and was wanting some first hand experience with Ketamine to discuss with the docs there. This has been EXTREMELY helpful to me, as well. I have had the ganglion blocks in the past with success, but am out of remission now and the blocks aren't working and the RSD is spreading relatively fast. I am trying to get any info I can to discuss with the docs before I get there, you know, getting my ducks in a row. So thank you.

Mike,
I am hope that her info helps you too. Please keep us informed on your status as well.

May God grant you all Peace and rest!!!
Renee'