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 01-25-2017, 11:32 AM #1
Hotfoot53 Hotfoot53 is offline
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Originally Posted by Shay08 View Post
I know that some insurance companies can be difficult when it comes to paying for ketamine infusions. I had to file an appeal to finally get them to cover it. My infusions started as a 2 week out patient. (5 days; weekend off; 5 more days.) They gradually increased the amount of ketamine each day. Each infusion lasted about 4 hours. After that there was a set schedule for boosters, but because my liver enzymes were off, I had to wait for 3 months before the next one. I am now on the 2 days every 3 months schedule and my liver enzymes have been good. I can't see how you can get the amount you need in just 1 infusion every once in a while. I sure wouldn't want to receive the full dose that I get now without it being titrated up slowly. It works for me, even though I couldn't follow the initial booster schedule.

Consider getting as much information as you can about it and filing an appeal. Some insurance companies will work with you. Otherwise if you have the finances for it consider private pay and shop around for price. Some places will work with you. Where I go the private pay price is up to $275 per infusion. For me that would be $550 every three months. There is another clinic nearby that charges $1500 per infusion. Big difference is that one is a medical school and the other is a private clinic.

You probably know that it doesn't work for everyone. There are also side effects, but there are also drugs to help counteract some of those side effects. As with every treatment, there is the chance it will help or not and the chance that the side effects will be mild for you or not.

Hope some of this information is helpful. Good Luck!

Shay
Shay,
Thank you! That is really good information for me. I've been asking a lot of questions of my doctor and getting info here plus researching medical/ pain science researchers to get a lot of ideas and opinions. For now the program I'm using is working, but I like to have something thought out in the wings in case I need it!
I'm glad for you that you've found something that works for you!
Best,
Hotfoot
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Old 01-27-2017, 12:34 PM #2
Shay08 Shay08 is offline
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Originally Posted by Hotfoot53 View Post
Shay,
Thank you! That is really good information for me. I've been asking a lot of questions of my doctor and getting info here plus researching medical/ pain science researchers to get a lot of ideas and opinions. For now the program I'm using is working, but I like to have something thought out in the wings in case I need it!
I'm glad for you that you've found something that works for you!
Best,
Hotfoot

Yes, gathering this information ahead of time is a really wise thing to do. I do get concerned that eventually I may need a different approach and I have been pleased with my latest doctor's knowledge regarding different meds and approaches. I do appreciate this site because people share what is working for them. Your input and input from people like Littlepaw who shared the latest info on clinical trials is so important. The more we know now the better we will be prepared to make new decisions if the need occurs.

Thanks for your and all of the members' input on this site.

Shay
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Old 01-26-2017, 11:30 AM #3
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Originally Posted by Hotfoot53 View Post
The gabapentin works for me but the long acting one was a nightmare. Everyone does need something a bit different I've been seeing.
Thank you for your greeting and your prayers and kind thoughts-
I'm here everyday with a willing ear also.
Hotfoot

I'm praying for everyone everyday with chronic pain
There is such a thing as long-acting gabapentin? If I'm not mistaken gabapentin is not like a regular pain medication and is in itself long-acting. I can't make heads nor tails of this. Can you explain it to me? I've never heard of this.
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All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 01-26-2017, 07:39 PM #4
Hotfoot53 Hotfoot53 is offline
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Default Long acting gabapentin is "gralise"

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Originally Posted by CRPSbe View Post
There is such a thing as long-acting gabapentin? If I'm not mistaken gabapentin is not like a regular pain medication and is in itself long-acting. I can't make heads nor tails of this. Can you explain it to me? I've never heard of this.
Gabapentin isn't a typical pain med, you are absolutely right, but it is short acting- which is why people take it 3 times a day.
Gralise has been available for about 3 yrs, it's only brand, no generic, and you take it once daily- which can be really convenient for people. You take it at night with dinner. It's not one for one with milligrams of gabapentin, and you can't take your regular gaba pills with it, but it is gabapentin. The pill or pills of gralise actually expand from gastric secretions and stay in your stomach for the 24hrs.
The starter pack starts at 300mg and increases to a max of 1800 mg.
I hope this makes sense~
Hotfoot
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Old 01-31-2017, 12:35 PM #5
lili85 lili85 is offline
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Default I'm new and probably wrote too much...RSD so painful i cannot think

Hi all. I was just diagnosed with RSD 2.5wks ago & was told I'll never dance again. The injury is 2 years old and I've got a lot of damage. I just wanted to introduce myself without disturbing this thread & also have questions but I've read your responses...I learned from back surgery...no needles. For me, I'm to scared of needles now. No nerve blocks. There's research that states it's no more effective then pain medication, PT, etc... I'm sure it works for some...but not me. I finally gave in after 10 years & take pain medication. Do they have a ketamine pill? I heard about a ketamine topical? I can't do an infusion. I'm done with all needles! I've been given Lyrica. What I wanted after 15 years of chronic pain was more pain medicine! I changed my medicine TO A LOWER DOSE (before RSD) and filled it every 2 to 4 months. Then I broke my foot. My doctor of 12 years left the practice. My new doctor doesn't know me. Doesn't know RSD. He is awful (PCP, Same practice). I'd love to switch practices but it's hard to go and say "Hi, I'm opioid tolerant. Every medicine makes me sick but methadone. May I have two, please"? [ I'm over-the moon-happy that this Lyrica seems to work, but it also seems to dissipate quickly...does anyone notice that?] THANK YOU FOR BEING HERE
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Old 01-31-2017, 09:32 PM #6
Hotfoot53 Hotfoot53 is offline
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Default Hey Lili85 - sorry that you have all this together glad you found here

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Originally Posted by lili85 View Post
Hi all. I was just diagnosed with RSD 2.5wks ago & was told I'll never dance again. The injury is 2 years old and I've got a lot of damage. I just wanted to introduce myself without disturbing this thread & also have questions but I've read your responses...I learned from back surgery...no needles. For me, I'm to scared of needles now. No nerve blocks. There's research that states it's no more effective then pain medication, PT, etc... I'm sure it works for some...but not me. I finally gave in after 10 years & take pain medication. Do they have a ketamine pill? I heard about a ketamine topical? I can't do an infusion. I'm done with all needles! I've been given Lyrica. What I wanted after 15 years of chronic pain was more pain medicine! I changed my medicine TO A LOWER DOSE (before RSD) and filled it every 2 to 4 months. Then I broke my foot. My doctor of 12 years left the practice. My new doctor doesn't know me. Doesn't know RSD. He is awful (PCP, Same practice). I'd love to switch practices but it's hard to go and say "Hi, I'm opioid tolerant. Every medicine makes me sick but methadone. May I have two, please"? [ I'm over-the moon-happy that this Lyrica seems to work, but it also seems to dissipate quickly...does anyone notice that?] THANK YOU FOR BEING HERE
Lili85-
Wow- you've got a lot going on right now and I'm sorry that it's coming at you at once. I can empathize. We all have different stories, meds,and treatments.
I am currently having a really lousy time of things, and despite that, I remain optimistic because it lowers my pain level to keep optimistic.
I use the protect-0-meter app for iPad and "explain pain" methods to manage pain. It helps a lot and doesn't have a needle.
I hope you feel better soon, it's a lot to tackle all at once- so while I'm sorry you need to be here, you've found a group who understand like living with pain.
Hugs- Hotfoot53
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