CRPS - Intranasal KETAMINE -Benefits/Risks?
 

Have other CRPS members had experience with intranasal ketamine?
I would like to know how well it worked and any information you have on the related risks. Thank you.

CRPS - Intranasal KETAMINE -Benefits/Risks?
 

I am scheduled for starting this intranasal treatment next week. From what I have read I learned the following: ketamine is a major anti-inflammatory and analgesic. The nasal form is more effective for pain than the oral form. It has shown positive results in neuropathic & nociceptive pain.
Any further input?

What?!?
 

Where have you guys gotten this before? Is it FDA approved? I would LOVE to try Intranasal Ketamine! Ketamine is something I have been seriously looking into. Anything to get out of this hell! Any information is appreciated.
Gentle hugs

Dear Nalakity-Not sure if FDA approved. It will be my first time on this medication. This is with Nancy Sajben, San Diego, CA. What have you tried? I hope to hear from others that have tried nasal or oral ketamine.

My daughter takes both internasal or sublingual from Dr Sajben as well. It provides her some relief but she has to be careful to stay fully hydrated so as to avoid bladder/kidney issues.

Thx betsykk!! Does your daughter just take ketamine when bad pain flares or on a schedule routinely to keep pain low?
Is sublingual easier than nasal to use?
I have been up to 6 to 8 sprays trying to figure out my dose and my nostrils were caked with the KET so it would not absorb more well.

any relief?
 

So have you found any relief at all from using it? I'm curious to know how it compares with other types of pain control. Do you use it regularly or PRN for flairs? I use Ketamine cream which helps a little but it is very expensive and ony provides short term relief.

Ketamine is FDA-approved in the United States for two-day use when the patient is awake. The comas aren't approved and most likely won't be for a while.

Dear Sandy - sorry for the late reply; my neuropathic pain is bad lately. I have stopped using KET nasal for now. I had tried to use it routinely but I am not sure if it was helping. If it was helping, the relief was short term. When in a flair I find it cumbersome to do nasal KET as so many sprays are required with wait time in between for absorption.

Our original plan was to take it in lieu of infusions but it has not worked as planned. Now my dd is scheduled for inpatient and then hopefully the sublingual will help keep the flares away.
lSublingual helped her more as the nasal gave her too much irritation in her nasal passages.

Morgan
The coma's were banned in the states and germany after a number of people either stayed comatose or died. It is now only done in one hospital in Mexico don't know if I'm allowed to give you the name, on a trial basis. You have to pay $50,000 to get on the trial, $9280 doctors fees ad a few other fees as well.

I have been on it 2 year now and its done amazingly well. its cheapers and eaier then doing infusions all the time. It is covered by fda and insurances do pay for it. I also take lossanges which arent as helpful as the spray

Dear alaska - I am glad to hear it works for you. How many sprays do you do at a time that you have found to be effective? Have you had any serious adverse effects fron the nasal KET?

Yes I have found it very effective, I take 2 sprays each nostral but everyones dosing is different. As for bad a feects I havent had any other then maybe a runnign nose after the spray which isnt bad at all for so pain relief.

My daughter has been in 5 ketamine coma’s. Her MD just admits her to the hospital for pain control and starts giving her the ketamine. Just be forwarned, it doesn’t work for everyone, and it really messes with your brain. Ketamine is a “horse tranquilizer” and is/was used as a general anesthesia med. It disassociates your brain and wipes it clean, hopefully including the pain. But with neuropathic pain (CRPS) the brain is so hardwired to remember that it has a hard time forgetting that. Ketamine is NOT an antiinflammatory and does nothing for the inflammation process. It is strictly a mind altering drug, that is why it is so popular in the night clubs and referred to as “special K”.
My daughter has been effected with RSD in both of her legs hips to toes and been hospitalized 12 times in the last 18 months. We have learned a lot. It is so frustrating for these patients inflicted with RSD, my heart breaks. I hope there is someday a cure for all!!!!!
Please know we cannot continue to suffer in silence and the FDA needs to know that many different things work for different people. There is no one medication that works for everyone. I am a RN and work for a major insurance company I am working on getting insurance companies to look at individual cases and not pay attention to what the FDA says!!! We need to band together.
:grouphug:

Are you sure it's coma and not infusions. The Comas last for 5 days where she is completely out and are banned in the US.

I am positive it is a Ketamine coma, she was on a ventilator. I have been a RN for 20+ years and the difference between infusion and coma has to do with dose and duration of medication. She has had the infusions also as an inpatient but the coma’s were high dose and mechanical ventilation. It is so scary having to watch that!!!
:eek:

Keatmine is very addictive, are you finding this addiction with the intranasal medication? Is this something you get at a compounding pharmacy? or is it covered by your insurance company?

Done some more research found report from last year FDA does not allow induced comas of more than 2 days length, so that maybe is what your daughter is getting, the 5 day one, which has been claimed as a cure is only done at one hospital in the world. Can't find the link at the moment but it's in Monterry Mexico

Dear momorfrsd - The nasal ketamine is compounded; it is covered by my insurance. However, I had stopped taking it recently as I found it to be too cumbersome to use (too many sprays) and was unsure if it was effective for me. We have just orded sublingual ketamine.

I'm looking into this myself. Doctor thinks it might really help me. Crossing my fingers but hoping to try a few other things first.

I think if you got the right dose Gutsy girl, the sublingual ket would help. I only tried the sublingual ket once and it was not the right dose.
Keep us posted.
I now have the ket troches (lozenges) for flares.
I just re-read this thread and I wonder if all forms of ket are highly addictive.

I'm going to ask my pain management doctor tomorrow when I see her about intranasal ketamine spray. We'll keep our fingers crossed... :)

Ketamine,&anti inflamatory
 

ketamine has been clinically proven as an anti inflammatory,so I'm sorry mom don't tell these people suffering from rsd that it doesn't.also.dont know where your daughter had her coma infusions .but it wasn't in the United States.i couldn't bear listen to any more of your misguided medical propaganda crap to know.also ketamine isn't highly addictive so stop with that crap too.Too all the rsd forum I have full body rsd for 6 years.had the ketamine infusion two years ago "10 day infus"during the ten days I lost 22 lbs from all the inflammation in my body coming out.i felt soo much better for about 9 months.i just recently started ket nasal spray 50 mgs 3 xs a day.i believe that the spray is better than the infusions.for one the spray is like 200$ for a months supply.and I get better results .i was bed riddin for the last few months.now I'm golfing again and living a much better life.ive only been on the spray 6 weeks too.drs claim they want to help us but charge up to 5grand for an infusion.the cost of a 10 dayketamine patient is about 150$ to 200$ .why screw us like that.most people don't have the means for that.and desperately need it.4 years ago dr schwartzmann charged me 800$ for 10 days.that was well worth it.but today drs charge 1500 -2000 for one day.also prednisone really helps me feel better.my internal organs have so much inflammation and don't work.my rsd causes me to be sick on the couch for months at a time.this treatment is giving me my life back.good luck all

I wish they would approve the coma method for those of us who have been through the hoops with drs, and cannot find relief- or for those whom are allergic to other meds/anelgesics(like myself). In the beginning I would have told someone they were crazy if they told me to do the ketimine coma method, but now that I've had RSD two years(with almost full body spread), I would be willing to try it. The reason I read that the coma even works is becuase theres a theroy it restarts your brain, but also restarts the pain cycle, like hitting a reset button. The possible memory loss would be worth not having to use a wheelchair or canes ever again in my book.

Ketamine is an anti inflamatory drug. It is used in large animals that are very valuable like race horses that are injured. It is a tranquilizer. They use it to sedate large animals for surgery. So saying it isn't an antiinflamatory drug is wrong. I worked at a vet clinic and was working on getting my vet tech license and working with large animals until I started hurting so bad I couldn't keep up with my school work because I would be laid out on the couch in pain. It does restart the human brain patterns. It was not originally intended for human use. It was made to sedate LARGE ANIMALS. Please look up ketamine and not make assumptions based on your own opinions. I wish your daughter didn't have to deal with this disease. It isn't fun. Individually we do a lot of research on the medication we are being prescribed. We still like to try and get opinions from others that have been on then. Please don't be angry with us. Be angry with this disease. We want to help each other get through this not tear each other apart. I know it hurts watching your child be in pain and not being able to help. It sucks royal boogers. Don't let it turn you bitter please. Keep positive for her sake. She needs you. Not just to help her but for mental and spiritual relief too. Think of how she feels when you are so angry. If you need to go hit a punching bag at the gym to get out some of your frustrations. Don't take it out on the people that are here to help.:hug:

My pain specialist in Tucson had 5 patients in a ketamine trials. Thy were 3 day comas instead of 5, approved research. I was pretty mad when he old me, I wished it was me but I am sure there were RSD patients in worse shape than me. I've Ben here in Albuquerque for about a year, and it was the last minor two I saw him that he was telling me about it... Spring of 2012 in Tucson.

Which insurance did you have to be approved for the nasal administration? My wife is using sub-lingual, but she needs better pain relief. She has Medicare and United HealthCare AARP for drugs.

Thanks!
John (VT)

I had anthem blue cross

Glyx-13
 

GLYX-13 (which is a cousin of Ketamine) is also a drug to help control depression, especially for those people who are resistant to treatment. The drug Ketamine comes in a Nasal Spray or intravenously but which also has many side effects. The drug GLYX-13 helps to control depression but with much fewer side effects. GLYX-13, however, only comes in Intravenous form.
Please, everyone or anyone please reply here if you personally have used either of these drugs or if you have any other or new information.

Never heard of it. Does it help with nerve pain of CRPS?