Ketamine Safety
 

Hi Everyone,

I have been reading on FB about ketamine, it's Called "Ketamine Club/CRPS" or close to that. Anyway I felt I had to post about the fact that there are some doctor[s] who are doing outpatient ketamine 10,5,3 days with very high doses and not requiring any pre-testing. That's the concern. I know my infusions where back between 2005 - 2009 and where inpatient. But things could not have changed that much. I would of never been able to be admitted for my inpatient without proper pre-testing. I did 3 inpatients. My target number was 37mg, but that was pushed up from a low does over 24 hours trying to reach 37mg per hour my late Tuesday or Wednesday. I couldn't get to the 37mg per hour my problem was my stomach just couldn't take the way it made my head feel which made my stomach turn kind of like I was drunk. I thing I made it to 32mg if I remember correctly. I did get success from ketamine eventually.

I'm not a doctor, but what I do know is that I have done it, it's a tough procedure. I did not have any hallunciations or terror or fear like I have read and heard from other people. These high amounts of ketamine on a outpatient basis with no testing at all is just scary. Not even a physc. evaluation. I just remember my doctor taking the pre-testing quite serious and discussed with me at length the pro's and con's of the ketamine.

I'm just throwing this out there out of concern.

Gabbycakes

Gabby you are right, and many of these patients are really young. I had extensive cardio and a psych clearance done prior to my treatments. But my doses are NOWHERE near as high as what yours and these kids are getting.

I also get Versed and Zofran along with my ketamine.

Sandy

Yes, I also got the versed and the zofran. I don't think I would of completed them without the zofran.

Thanks again, hope your feeling well!

Gabbycakes

Great to visit with you... The use of zofran and versed scare me...My tummy is sensitive enough... Is the Ketamine infusion still effective if our RSD is internal???

Hugz, kathy:hug:

Hi Kathy,

Wish I had an answer but I really don't know. It's not a normal thing for me for have stomach issues, I usually never have a problem, except with the ketamine I mean it's just bruttle, for me. I have heard some don't have any problems with the nausea. The Versed is suppose to be claim you and help with the mental issues but the zofran is simply for the nausea and it works incredibly.

Gabbycakes

I don't know this for a fact but I don't think Dr K does pre testing. When I called about making the apt for the consult since I was coming a distance the nurse who I spoke to said if I decided to do it I could do it right away. I could be wrong though since I have not went for the consult yet.
Unfortunatly this issue does not surprise me. Some doctors just want you in asap to make the money. Sorry to be negative

If that is how they run there ketamine program I would not entertain that facility for 1 moment.

You can get Ketamine covered. Everything I had done was covered by insurance and when I had my boosters with Dr. Schwartzman he was in-network. The only out of pocket was any co-insurance, I have a PPO type plan, and a small payment directly to the doctor for his 3 to 4 times a day daily visits to my room which the insurance would not cover, but it was not any crazy amount and I did see him 3 or 4 times each day.

I just think it's very irresponsible of this doctor. To me he only wants the dollars. And I have never heard of "cash up front", maybe if I'm buying a car and trying to make a deal. It's puzzling to me.

Gabbycakes

As much as I struggle with the idea of our journey and safe haven with Ketamine, being covered by insurance or not...it's about money...Money to be made for others on our painful life altering condition... It's a bunch for us to go thru..monitary provisions, decision to go forward with it then of course, to have the treatment done..which is no walk in the park for the patient...AND we still have RSD!!

Seems like the treatments that become available to us always have a price tag wrapped all around it and a profit for the Dr.'s..I fight that under lying fact... Like whats the hot intervention this month??? At the time, the newest is very believable and we go forwarding fully believing this could the magic answer least in managing our pain.... While the Dr.s pad their pockets and we once again come up empty.. Now they need to be attentive to do pre work procedures and never minimize the importance of these pre-procedure work ups and the risks at hand...it needs to be about our well being and it needs to cautiously handled.. ESP. Due to our suspect-ability of repercussions of our illness. We pay the biggest price, always..

Does anyone have an idea if the Ketamine treatment is beneficial once our RSD has gone inside, internal ???? Iam having some chest wall, tummy RSD issues.... The monster has wandered!!

Hugz to all and thank you for allowing me to spew!!

Kathy

Dear Kathy,

Yes, ketamine is absolutely effective For RSD that is internal. When my ketamine starts wearing off, after maybe 3-4 weeks, I have issues... I can totally feel the difference. Then I get an infusion and things return to normal...

I take Zofran orally and it is administered for me during my infusions because I get so sick to my stomach from ketamine. That goes away within a day or so. Versed is administered to minimize any other effects of the ketamine and to help me sleep during and after my infusions. My doctors want me to rest on the days I get my treatments, the Versed is a good way to ensure I go home and take a nap instead of walking my dog or doing yard work! They know me too well!

The money part about pain management with docs is so profoundly painful. I agree with everything you said...it is an extremely profitable venture for a lot of docs, and you never know if what they recommend is really in YOUR best interests or theirs. after being sick for 4 and a half year years I've learned to be skeptical of the entire profession.

For me, ketamine works well. I need it in order to work, otherwise my pain gets to be too much because I get horrific head aches. My head always hurts, but as my ketamine starts wearing off I can't control the pain with any of my usual like Fiorcet or Frova.

Kathy, what's the status with your 5 day inpatient? I thought you might get that done? I truly hope that you give it a shot...keep us posted.

Xoxox Sandy

My insurance said they would pay a part of it, after I pay the first $7500 initially, and the first $600 for each infusion. Since the doctor I go to does it in an in office "ward" in a building that is part of a hospital, they won't pay the room fees, bed fees, doctors or nurses fees, or supply fees. From my part, I don't see much they will actually cover. :mad: one series of infusions would take every dollar I have left in savings and probably run up quite a bill on top of it. Now that I am on SSDI, I just would not have a way to pay it off.

On top of that, I know from having many animals over the years and working for a vet for a little bit, ketamine is a serious drug. It scares me. I know my veterinary is not an M.D. but he has been a good friend for 30 years. He has been using ketamine for over 35 years. He says if he were in my place, he would not do it until there is a lot more research, that follow people longer years.

Pain medications have not helped me. Nothing has helped me very much. I would love to be out of pain, but I am afraid of "at what price?" I don't just mean the money. I mean the effects of the ketamine, long term.

I would be very surprised if they would do the ketamine without bloodwork and an EKG. If you are seeing a regular counselor (as many patients are and should) then he might skip that portion of it. My daughter always has to have work done before the infusion and she has had over a dozen at this point.

hi
 

I am happy to report that my doctor ( Dr. Leverone in CA.) does require prior testing before he even considers doing the infusions. Here is a small blip from his site and I quote:

"In order to schedule ketamine infusion therapy treatment with Dr. Leverone you will need to click on the questionnaire, fill in answers to the questions, and then click "submit". Please note that there are a few exclusionary criteria for ketamine infusion therapy, not everyone can receive the treatment even with a correct diagnosis, and these will be revealed in the questionnaire. You will also need to fax in the completed physician referral form (click on that page and print) and a recent (within 30 days) complete history and physical from your general practitioner. It is very helpful to also fax a copy of a recent workup by your pain specialist.

Additionally Dr. Leverone will need lab work done within 30 days of treatment, to include CBC, Electrolytes, and Screening Liver Function Tests (ALT, AST, Alkaline Phosphatase), and a 12-lead EKG. Chest X-ray is sometimes required, but may be waived in certain patients. This can be determined at the time of scheduling.

All of the above pre-procedure information must be received by Dr. Leverone prior to rendering ketamine infusion treatment."



For me personally, I would never see doctor that I didn't do research/check on first.
I'm getting my next infusion on the 6th so if I'm not posting for a bit, that is why. Oh, I had to have my regular doctor here also sign a statement stating that I am medically clear for this procedure in addition to the above.

Take care,
Dee

Hi Dee,

We are the lucky ones who are getting pre-testing and good medical care. But as SandyRI states the FB site states that there are young people getting ketamine infusions without any testing. I don't want to talk negatively and give names because I have no proof that this is true or not. But better safe then sorry. The FB Site is an "open" so if you have an account you can view all the post. It's really eye opening.

Have a great day.

Gabbycakes

Does Leverone require psych clearance?

Doesn't he use REALLY high doses of ketamine in a single outpatient treatment, then prescribe oral k for a week or two after? ( I get nauseous just thinking about it..ugh.)

Everyone is different, but I know that I've never had hallucinations at the low doses that I receive. They are also infused over a 4 hour time period with a lot of Versed. (But my doses also don't last anywhere near as long as Leverone's.). I did have really bad vivid dreams for the first several months after I started getting my treatments, I used to dream about my shoulder getting sliced up in pieces or yanked apart, probably because I had some pretty awful PT sessions after my surgeries that I was traumatized about.

psych clearance was standard at all the ketamine docs I went to a few years ago in Boston, NYC, and NJ. I know Dr. S requires it, too. a doctor from NYC told me that one of his patients that was injured in the collapse of the World Trade Ctr just could not tolerate ketamine at all - as soon as they began his first infusion he started hallucinating about 9/11 and they had to stop.

Interesting topic...

Oh yes...this is interesting..My situation, I was approved for the 5 day infusion with Dr. S...but my insurance will not budge for any booster coverage... In order the 5 day infusion to be affective, I need the boosters.... AND I live 6 hours away from Philadelphia... Which there lies My next dilemma... As trips and company to stay there with me during the treatment is almost not realistic... I'd have to almost move there...plus we have two kids heading for college. I can't justify using all of our savings for a temporary pain relief... this is no way a cop out but a bump in my road for sure... Since my appeal process began for insurance to cover for any costs, my condition has worsened...My RSD is now internal...chest wall and tummy involvement...Eating is a problem...and this twist in my condition has caused me to stayed focused and feel so much more poorly that the red tape of the rest of this has become a big job... If only we could all receive the medical help and recognition it takes to live with this puppy without the constant fight... And money worries!!!!

Again..Iam so appreciative of all of you!!!!!
Hugz to all...

Kathy

To me the psych clearance is less of an issue as the physical issues. Those psych tests to me are not very reliable and more done for insurance then ones true mental status unless something is seriously off.
Like Daylily I am also concerned with the long term issues that may happen. Also not to be negative but for the most part I am not hearing about long term benefits of this. I have been reading blogs of people who have done both op and even the coma and for some reason they stop the blog often times or are often struggling still. The people who have had the coma often are waiting to go for another. I know some stated here that they have had benefits so I am not sure.
As for the doctors many know that we are desperate for relief and why they charge such high fees and don't take insurance. If you go on Dr K website he has a list of the prices and procedures. You pay up front with him and then you can submit it to the insurance. Now I feel he could help so many more people if he worked with the insurance. I am not sure what kind of pre testing he does but I was told that I could go for the consult and stay in the area to do the procedure right away.
Lastly part of what scares me is that I wish the doctor would look at each person with rsd as an individual. I feel with some they would suggest this treatment to anyone with rsd but it may not be right for that person. We all respond different.

I am 21 and get a high dose of ketamine... and frankly I can care less if it does harm on my body and shaves 20 years off my life... because without it I would have NO life right now and be WAY more miserable, have no social life, not be able to walk, eat... nothing....

Its a personal choice.... if you dont want to get the high dose of ketamine I dont believe that you need to go that route... but I know I speak for MANY of my RSD young friends... and its our only chance to lead a semi functional life-- so it would make no sense to think about the negative parts of it. I would rather have 20 good years than 40 horrible ones.... just my opinion...

I just think your decision is the best for yourself... nobody can make that for you. If you are afraid of the meds, then maybe an alternate route is for you... But being 21 and not 40 it sucks because we havent even started our lives so we will grasp at what helps us (not belittling rsd later in life) I just think its a different mind perspective.

Blessings on all who take the adventure down the ketamine route or those that chose otherwise! make the decision that is best for YOU!!! :)

They don't do Ketamine infusions over here in the UK as they aren't covered by our National Health Service (NHS). My mum has looked into the infusions for me but it would mean travelling to the US and my Doctor feels I may not be able to get them done anyway because I live outside of the United States.

I am on oral Ketamine but my doctor has said I must only take it when i'm in a really bad pain flare. I can take it up to 3 times daily if things are really bad but he doesn't suggest that, partly because of my age (he thinks the Ketamine could mess around with my hormones) and also he feels it could cause other lasting health effects.

When I have the Ketamine, I have what others have described as the 'drunk feeling'. I don't know where I am, my heads a cloud etc. It's horrible! Other times I feel really sick. You can't tell how i'm going to react to it so I don't take it on school days as it messes around with my concentration wayyy too much! I do tend to find that if I have a meal before taking the Ketamine, it can minimise the side effects but even then I don't risk taking it for school unless absolutely needed.

I agree with what the others have said, do lots of research before trying the infusions ... try other treatments etc. I know for me, we have explored all other medications so the ketamine infusions may be the way to go one day but I don't want to go down that road at the moment from what i've heard ... especially if the pain is only going to return!

Take care everyone,
Alison

hi
 

Hi Gabbycakes,
Its sad to hear that there is even a chance of doctor(s) not requiring testing before doing these infusions, very sad. I will def. check out the FB site. I only wanted to make sure that everyone knew my doc, Dr. L, does require testing because I would never recommend him to anyone if he didn't nor would I be his patient.

Thank you for the info, and I will go check out the FB site.

Take care,
Dee :grouphug:

hi
 

Hi Sandy,
On the pre-questionare, if you have anxiety, depression, ect., then if memory serves me right, then yes, you need clearance. I get panic attacks since getting RSD and I also get depressed when in flare, but, I also have been cleared by psych when I had my SCS trial, pain pump implant and even before I received my first infusions. I think some want psych clearance to make sure you don't suffer from mental problems not related to RSD, I think ( brain isn't working today)

Yes on the 2 weeks of oral ketamine after infusion. It didn't cause me to have hallucinations or to freak out or anything, in fact, I never sleep so good, and basically thats what I do, sleep, and its welcomed and much appreciated.

He does do a higher dose, based on the patient and how they are doing, adn he and the ICU RN's are watching you very carefully during the whole time you are there as well.

I'm still a bit mortified that there could be doctors out there not requiring pre-testing, my mind just cannot wrap itself around that. Whats going to happen when one of these patients die because of unknown liver problems, bad heart, glaucoma, etc.? I'm still shaking my head in disbelief, wow.

Okay, didn't mean to ramble, I will def. check out that FB site, and please, if you are reading this and new to RSD and ketamine, research your doctor and their facilities very very carefully, and the other options out there.

Take care,
Dee :grouphug:

Dee, how long do your infusions last? I've heard some of Dr. L's patient's can go for 8 mths on just ONE treatment...That's awesome. (sorry guys, didn't mean to hijack the post)...

hi
 

Good morning Sandy,
Yuppers, I'm one of Dr. L's patients who get the long term remission from the infusions. It has been well over a year since my last infusion, but, I tend to wait until the very last moment before going back. why, I don't know but my mother says its because I am stubborn :D and she's been telling me for the last couple of months "when you going back", "don't you think its time" when you going back", etc., etc., Bless her heart I know she only nags at me because she cares and because my parents live so far from me and believe me you, they are relieved at my upcoming date with Dr. L, I just wonder though, what they going to nag me about then :eek: just joking, I love my folks dearly

I just try to get the most bang for my buck so to speak, I've always been this way and probably will not change anytime soon. After an infusion and the meds, I keep moving, at the gym and at home. I have a hot tub and although I don't use the jets (ouch) I get such relief from it ( excellent investment for anyone with RSD in my opinion as you can control the temp of the water), I've moved out of the cold states ~ luv luv luv Arizona, I meditate, and do everything possible to keep a normal social life, not focusing on the " cant do's but rather the can do's. So to me, I think I make a huge difference in how long I stay in remission. Now I do have my days where I hurt more than others, but I just modify what I'm doing and move on. I did wait a bit too long this time though, I'm human and I know I messed up but I'm fixing that :o

Didn't mean to go on so long or take away from the safety of ketamine, I haven't gone to FB yet but I will today, it's early here so as soon as I sign out, I'm heading there. It bothers me, it really does and for a lot of reasons, but I will go take a look before I say much more on that, other than reiterating that pre-testing is nothing to JOKE about, they (drs.) do this for a reason, a dang good reason: your life.

talk soon,
Dee :hug: