Hi friends!

Last week my new PM infused Ketamine in my epidural along with Lidocane. I am just amazed at the immediate relief I got. Today he gave me a syringe with Ketamine to take at night for pain relief and to help me sleep.

I take another syringe (with no needle) and spray in on the roof of my mouth. He started with .5cc.

He also explained that NIH discourages the use of this for RSD pain. Why? Because they want to market newer meds that cost a fortune so hospitals can make a better profit! Also said that nerve blocks and other spinal injections are the safest and easiest procedures to do. It's not necessary to hospitalize and put the patient under sedation for nerve blocks. Again, more profits!

I'm sorry, but I feel that my health and pain relief are just a little more important than someone's profit margin. I feel like a lab rat at times. It disgusts me. Here we all are, horribly suffering. Alot of us have taken a huge hit to our pockets from this and our families are living in h*ll trying to understand and help us. Luckily for me, my RSD is a result of a w/c accident. If I didn't get hurt on the job, I wouldn't be able to pay for my treatment because I am unable to work. I feel very bad for those of you who have to scrape by just so you can get SOME relief.

I think it's unacceptable that doctors and drug companies are allowed (and even encouraged) to push unbelievably expensive procedures and meds on us. I mean, I've been at the ER and they give me a script for a $400.00 medicine. Then I try to get it filled and realize that I don't have nearly enough money to purchase it; only to call the doctor back and he prescribes another med that costs $10.00. I've had to borrow money (which is humiliating) just so I could get my daughter antibiotics. What's wrong with this picture?

I hope the oral Ketamine works. I will keep you posted!

I hope everyone has a great Fourth of July!

Kim

Good luck with the oral ketamine , I had heard of people taking it but assumed it was in a pill form , is there both ? Hope it continues to work and give you some restful nights....Take care !

Kim...Great to read you got some relief..did you have to be hospitalized to receive the oral spray or even the pill form, if it came that way..?? My feeling is that you did not but I just want to be sure..I asked my PM Dr. for Ketamine based creme to use, she said she did not hear of it in that form but doubted I could have it because my RSD is whole body and too many areas to cover...besides I can't touch my sore areas to apply it anyway.... BUT lets take this Ketamine for what it is worth...

Hugz, Kathy.....

Let us know how this works for you !

I'm particularly curious to know how long it lasts orally, but here's hoping you don't need it for awhile !

i took it orally for 3 years before getting the infusions, started at 20mg/cc, 2-3cc's every 2 hours as needed. was on that dose till i began the infusions, then after the first one wore off my pm bumped it up to 50mg/cc, still 2-3 cc's every 2 hours as needed. its the only med that i haven't become "immune" to.

How expensive is the Ketamine...in oral, spray or pill..I have no insurance, but I need some RELIEF!!! I say that I am terrified of it, but if it's in small doses, I may give it a go.

It sounds to me like you have a Dr. that is trying to save you money as well as the insurance companies.

My blocks weren't done in a hospital, they were done in an office of an anesteolgist. Some are set up now for that and I was put to sleep to do them.

I do believe too that these Drs. are thinking ahead. With this Medicare and Medicaid and insurance companies new issues coming up with the Government, I believe some of the Drs. care enough to try and cut cost to save their patients from losing out all together.

Drs. do get kickbacks from pushing some meds. My Nurse has told me that before.

My Dr. does as much for a patient as he can in his office to save from sending them to the ER. He's told me many a time don't go to the ER to call him. I think too they see that the ER is a joke for many of their patients getting help for cronic pain.

I hope this does work for you and it sounds like Andrea is getting relief this way. That's a positive note in my book. If you can find more ways to control your pain at home, that's good.

Even though WC is paying for your care, it still comes down to pushing them to the limit of where they stop paying and another court battle has to ensue to get the help from them again. We see it a lot on the forum here.

I get worried about how far my insurance will go in paying for my care and have said as much to my Dr. in the past few months. He says not to worry about it but I do.

Too many changes are being made with the Government overseeing insurance companies and patients now.

Keep us up on how this does for you. It might be a good answer for many instead of the infusions and a way of helping with controlling the pain at home.

Ada

Thanks Ada.... I am at my wits end with the burning, spasms and so fourth...the pain I am used to as I have had Cerebral Palsy all my life....if was as easy as pain I could take this stupid disorder...but everything else just can drive a saint nuts!...I am praying for a miracle and hope that I will get my SSDI soon then a medical card.

when i'd get oral, when the dose was 20mg/cc i'd get 750cc's (2 bottles) it'd be about $180 a month. at 50mg/cc same 2 bottles, it went up to about $220. the pharmacy didn't take my medicare/medical rx insurance so i'd have to pay out of pocket. at least for the oral it has to be mixed so it has to be made at a compounding pharmacy

cindi,

My doc said that you cannot get this at any pharmacy. He filled up a syringe to take home with me. Told me that it's very inexpensive, maybe five or ten dollars per syringe. He orders it from his supplier and just gives it to me.

I hope you can obtain some, and get some relief.