Start my ketamine nasal spray today
 

I've been stuck on the couch unable to get up for 5 weeks during this flare up.i have inflammation in my body .the fatigue I have is crippling,I'm hoping this round of ketamine gets me back on my feet.would like to enjoy the weather with a nice walk with my wife and dog.rsd took away my life I once had.i still enjoy some things and know it could get a lot worse.i hope all of you are feeling well and are pain free.

Ketamine Nasal Spray
 

Hi,

I am very interested in this. Can you tell me more about it, it's strength, dosage, etc.....You mentioned you started it. How is it going? Also, thank you for your supportive response to my posting about CRPS experiences and coping.

How are you doing?

Deb

I hope the ketamine nasal spray helps you with your pain. I use ketamine nasal spray and out of all my meds its the one I wont do without, its gotten me back on my feet and numbs the nerve pain down enough to kind of have a life with it I have been able to travel back home to Alaska for the summer and be with my mom while she commercial fishes being in Alaska was the most favorite place in my life and with the ketamine I thank it for allowing me to get there for the summer, I also have ketamine lozenges but the spray helps better. I don't know what strength you take but if yours doesn't help maybe the strength isn't high enough. Mine is 100mg a spray and I take 2 sprays each time. I have a aunt with rsd and she got her doctor to give her ketamine nasal spray but her dosage was at 50mg, it wasn't until she went to the 100 that it really helped her and now she has more a life with it too.
I will hope that it will help you as it has helped me and my aunt, so you can enjoy the weather and be with you dogs and have a good summer.

Samantha

I hope the ketamine helps you to feel better so that you can go for that walk with your wife and dog. I will keep you in my thoughts. Take care my friend.

I hope you get relief.

WOW I would love love to get anything Ketamine but no one approves, mentions or prescribes it here, ever. EVER. Is it covered under insurance and if so, how commonly is this prescibed to people with RSD?

Of course I have heard of it, for a while, but don't know anyone (docs) who would ever consider helping me get it.

Yes really, even after 25 years of RSD, lol

GOOD LUCK

Thanks for the post,I never heard about ketamine nasal spray at all,I will do my research about it.
My scs helps but still have bone to bone rubbing pain,scs work for neuro pain.
I don't take heavy meds I mean stronger than tramadol ,so definitely will check,thanks. Also for more info. You can use the link I will provide you for rsd ,hope helps ,Jesika :grouphug:

http://www.rsds.org/index2.html

Hi burn baby
 

What state do you live in? Ket nasal spray is still kinda of new.you need a compounding pharmacy to make the spray.im on workers comp and they pay for it,I think it costs them about 200$ a month for my prescription.if your close to newjersey I could give you my dr ,she is very nice and deals with rsd patients.it took me about a year to get her to write a perscription for it.i had to do all the leg work in finding a pharmacy and dosage exc..try and educate your dr about the ketamine compound nasal spray .thats what I did .best of luck too you :)

Hi Alaska
 

I'm still on a ketamine 10 mgs per spray 10% ketamine.the pharmacy I use say that I can't get it in a 100mgs dosage they said maybe 25 mgs at the most they could do.im on 4 sprays @10 mgs per spray 3 times a day.i know it's not the rite dosage I need ,way too low .but my dr doesn't have a clue.the pharmacy doesn't either.i would like to know what pharmacy you use so I could call and get information in how to order it at that dosage.ive done ketamine infusions befor,I know it takes more than a 40 mg dose to really get the effect we need.but it's better than nothing for now ,I would really appreciate your help,thank you :)

I live up in the poconos of PA close to Allentown and every compounding pharmacy up here I have been to 4 and they all can do 100, I even got them filled in RI, and Alaska and no one ever says its to much. I actually never heard of anyone that I know getting it, getting 10 and the pharmacy saying they cant do it high everyone I know are either on 50 or 100. And then I get the lozenges at 30mg each. The first doctor to prescribe it to me was a dr in RI now my DR in Bethlehem is doing it and neither have a problem with it. My Dr in Bethlehem is a palliative Dr and with dealing with cancer pain understands I need the dosages I need, they even give me intravenous morphine for ims for when Iam going into flares to limit me having to go to the ERs. Sorry your having issues getting the dosages you need if you want the address to the pharmacy I use I will give it and they take insurance is your accepts it. My insurance use to pay for it but once Obama care kicked in they stopped without cause by even their own rules on what they cover they say it should be but wont. Its 125 for 2 big bottles which isn't actually bad for a med that gives me a life and allows me to do more of what I want to do, I get to go home to Alaska for the summer and so its much worth it.
Here is the address to the pharmacy if your Dr will prescribe the amount you think will help best.

Phone# is 570-476-6936

1619 N 9thst Suite 3
Stroudsburg PA 18360

And there is another in Allentown I don't know the phone# or address but can find it if you need it.

Samantha

Thankyou
 

Thankyou Samantha ,that was very sweet of you,I'm gonna look into your pharmacy,I told my dr about losanges befor and she said that she knows there aren't losanges because ketamine can't absorb thru your mouth.i know they make it,because of there's a dr sajben in sandiego that has a website and talks about how she treats her patients with ket nasal and losanges plus this low dose stuff .anyway I really appreciate your help and will keep you posted.thanks your the best :)

Thanks for the info and glad you were a good advocate for yourself. Is it helping you feel better right now? I hope so. Yeah I see very very few docs and if I bring up anything Ketamine they freak. Even PM docs. It's like it is the devil...but persistence is helpful, I give up too easily with docs since I have had this so long, I expect very little, and get that, LMAO

Feel better and tx. Yeah if you don't mind PM me sometime with docs name or number that would be great. I am not in NJ or NY but am on East Coast.

Can't imagine working with docs that fight for you, in a good way, lol. It has been difficult at best ...but I have a PM I like, they are just so conservative. ULTRA.

thanks so much

Can anyone help me understand what symtoms improve with nasal ketamine treatment? Thanks, Lottie

For me it relieved my symptoms of the burning and needle pain I have and takes away the hypersensitivity in my limbs. Ketamine is an anesthetic so it actually numbs the nerves down for some it takes it all away the sensitivity and burning pain for others it just calms it down to be bare able. I use to always have all my skin covered cause the breezes would cause to much pain, but I don't need to anymore. I have gotten more strength back as without the severe pain I can get up and do things like Iam heading home to Alaska and watch my family commercial fish, we live in a cabin in a remote village and before the ketamine nasal spray I couldn't go I stayed home on a couch now I can ride four wheelers and be on the beach with my family. I cant thank my doctors enough for helping me to have more of a life. I do still have my limits and flares here and there but before the ketamine I was in the ER and most times hospitalized for up to 10 days in flares every 2-3 weeks now I have only gone in after 6 months and that was due to a major fall that really flared me up. before just a dog stepping on me or a scratch would do that. I know my aunt is the same with it helping her. I don't know how others have done with it, I know of one person having a reaction to it and she had a too high dose and she had a bad hallucination, everyone is different on what they can handle and how it helps. But just from my perspective its been my miracle.

Samantha

Ket
 

For me it reliefs my pain ,and also helps with my anxiety I have.but for me the biggest thing it does is knocks down my inflammation in my face ,stomache ,limbs exc..helps me digest my food better.i have major stomache issues.best of luck Danny :)

Thank you for responding alaska49 and 89danboy! So glad that someone responded to Lottie's question. I have been waiting. So there is relief to the muscle and joint pain then?

The compound Ketamine creams would/should help with muscle and joint pain also right?

I am adjusting a med right now that should take about a month to level out. Once that is done my doc has said he will give me the compound. I could tell he didn't know anything about the nasal spray when I mentioned it. I would love to hear more feedback on results from those who use it! Also, is it expensive? Thanks in advance!

Free, I've used the ketamine compounded cream and didn't get improvement. Now! I do have to admit that I did not use it daily because its messy and got on my clothes, furniture and seat of my car (applied it to my calf). Maybe I should try it again and ask for it in a less messy formulation.~lottie

Ketamine Nasal Spray
 

I've just gotten the spray after a year of paying (an unholy amount of $) cash for infusions. Spray is unbelievable. Wonderful. As much of an impact as the infusions. I hope I can back off the infusions a bit, without losing progress made, only because of the cost. I'm still pretty severely impaired, but, managing a bit better. Only reason I was able to get infusions, only reason I was able to get the spray: self - advocating!!

Ketamine Nasal Spray
 

Got mine a few days ago. It's a game-changer. Still in a verrrry challenging place but not in the grip of the pain in quite the same way. Good luck with the Rx.

Seriously- that's terrific, good for you!! Can you share your self advocacy tips? Any suggestions on how to convince the doctor and the insurance company? Thanks in advance for any tips you are comfortable sharing. Wishing you continued improvement ~ Lottie

That sounds like a dream...
 

I live in Indiana, a super conservative state, and I have been super active in trying to advocate for myself for ketamine spray. My doctors practically laugh me out of the room every time. They actually have said to me and mother (who I bring to my appointments bc she is an RN) that it is ridiculous to suggest treating me with a "street drug". This is after we have showed them peer-reviewed journal articles and basically done their work for them. They do the same thing with any sort of progressive medicine, even if it isn't pain medicine related. They know very little about CRPS. It is very frightening that they are responsible for my healthcare. The only way I am going to get adequate care is to go out of state and I just don't have the money to do that right now. Luckily, I won't have to travel far once I have saved up the money. There are a cluster of forward-thinking doctors in Chicago, or at least I have heard.

I am pleased to hear about your good results! It gives me hopes for when I finally can get my CRPS treated properly!

I heard so much about it but some insurance don't cover any form, specially wc ,dawn bad luck , I do want to try something combine with my scs but unable to pay out of my packets but hope soon an rsd specialist can finally tell the insurance I do need more medical treatment ,rsd is defiantly not reaches easily an maximum improvement or is permanent stationary, dr are so wrong in many cases, we as patients many times know more and they get pay :rolleyes: how sad.
I hope you keep getting the relief you need and thank you so much for sharing with us, gentle hugs and lots of love from Jesika .:grouphug: