Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 05-29-2014, 12:08 PM #1
89danboy 89danboy is offline
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Default 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.
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Old 05-30-2014, 07:57 AM #2
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Default 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
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Old 05-30-2014, 09:19 AM #3
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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
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Old 05-30-2014, 09:47 AM #4
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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.
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Old 05-30-2014, 06:59 PM #5
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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
Quote:
Originally Posted by 89danboy View Post
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.
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Old 05-31-2014, 12:15 AM #6
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Quote:
Originally Posted by 89danboy View Post
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.
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

http://www.rsds.org/index2.html
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Old 05-31-2014, 05:01 PM #7
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Default Hi burn baby

Quote:
Originally Posted by Burnbabyburn View Post
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
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
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Old 05-31-2014, 05:12 PM #8
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Default Hi Alaska

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Originally Posted by alaska49 View Post
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'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
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Old 05-31-2014, 08:58 PM #9
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Quote:
Originally Posted by 89danboy View Post
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
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Old 06-01-2014, 02:49 PM #10
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Quote:
Originally Posted by alaska49 View Post
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 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
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