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)


advertisement
Reply
 
Thread Tools Display Modes
Old 01-25-2017, 11:32 AM #11
Hotfoot53 Hotfoot53 is offline
Junior Member
 
Join Date: Jan 2017
Location: Florida
Posts: 47
5 yr Member
Hotfoot53 Hotfoot53 is offline
Junior Member
 
Join Date: Jan 2017
Location: Florida
Posts: 47
5 yr Member
Smile

Quote:
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
Hotfoot53 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
PurpleFoot721 (01-27-2017), RSD ME (01-27-2017), Shay08 (01-27-2017)

advertisement
Old 01-26-2017, 11:30 AM #12
CRPSbe's Avatar
CRPSbe CRPSbe is offline
Member
 
Join Date: Mar 2009
Location: Belgium, Europe
Posts: 832
15 yr Member
CRPSbe CRPSbe is offline
Member
CRPSbe's Avatar
 
Join Date: Mar 2009
Location: Belgium, Europe
Posts: 832
15 yr Member
Default

Quote:
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.
__________________
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
CRPSbe is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
RSD ME (01-27-2017), Shay08 (01-27-2017)
Old 01-26-2017, 07:39 PM #13
Hotfoot53 Hotfoot53 is offline
Junior Member
 
Join Date: Jan 2017
Location: Florida
Posts: 47
5 yr Member
Hotfoot53 Hotfoot53 is offline
Junior Member
 
Join Date: Jan 2017
Location: Florida
Posts: 47
5 yr Member
Default Long acting gabapentin is "gralise"

Quote:
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
Hotfoot53 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
PurpleFoot721 (01-27-2017), RSD ME (01-27-2017), Shay08 (01-27-2017)
Old 01-27-2017, 12:34 PM #14
Shay08 Shay08 is offline
Junior Member
 
Join Date: Sep 2016
Location: Northeast PA
Posts: 86
8 yr Member
Shay08 Shay08 is offline
Junior Member
 
Join Date: Sep 2016
Location: Northeast PA
Posts: 86
8 yr Member
Default

Quote:
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
Shay08 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Littlepaw (01-28-2017), RSD ME (01-29-2017)
Old 01-27-2017, 08:18 PM #15
Hotfoot53 Hotfoot53 is offline
Junior Member
 
Join Date: Jan 2017
Location: Florida
Posts: 47
5 yr Member
Hotfoot53 Hotfoot53 is offline
Junior Member
 
Join Date: Jan 2017
Location: Florida
Posts: 47
5 yr Member
Smile

Quote:
Originally Posted by Shay08 View Post
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
Shay-
I agree having alternatives researched ahead of time or just familiarizing myself with options does make me feel more in control and more prepared for whatever changes. I was talking with someone I trust about RSD being without a cure and they named off diabetes, blood pressure, heart disease etc which also have no cure. It helped me gain some perspective after a difficult week.

Little paw mentioning research studies was great because I printed studies out for the foot doctors staff this summer, but never considered it for myself! 😊

For anyone reading this thread:
I did want to add about the gralise that the part I had the biggest problem with was that because it is time release I wouldn't know when I could get relief, couldn't plan when I'd be safe to drive or modify the dose if I was in less pain and didn't want as much in my system. So it felt like a roller coaster ride. Also, the change from 2700mg gaba to 300mg gralise (going up to I think 900 by the fourth day and staying at that for 4 days) left me really under medicated and the side effects from the rapid decrease were uncomfortable. I'd recommend a slower reduction of gaba if on a high dose and I did speed up the gralise faster than the starter pack which was very helpful.

And that's all from me now, thanks for reading a long post.
Hotfoot53 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ger715 (01-28-2017), Littlepaw (01-28-2017), RSD ME (01-29-2017), Shay08 (01-29-2017)
Old 01-28-2017, 03:34 PM #16
Littlepaw's Avatar
Littlepaw Littlepaw is offline
Senior Member
 
Join Date: Nov 2014
Posts: 1,537
8 yr Member
Littlepaw Littlepaw is offline
Senior Member
Littlepaw's Avatar
 
Join Date: Nov 2014
Posts: 1,537
8 yr Member
Default

Hi Hotfoot,

A word on the ketamine protocols...if you get in a bind and need something added to your routine, weekly ketamine may actually be able to help. The majority of studies are done on the 10 day treatment but there are other methods. My PM now only administers ketamine once a week at his clinic and that seems to be working for many of his patients. For me, it was the build up over time of weekly then bi-weekly, then every 3 weeks, etc that helped break my pain cycle. Now, like Shay, I only go every 3 months for a one session booster. This has been keeping things pretty under control and going once a week was a lot easier on me in the beginning both physically and financially. My cost per session is in keeping with Shay's as well. My infusions run $300.
__________________
Littlepaw

Shine Your Bright Light
Littlepaw is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
RSD ME (01-29-2017), Shay08 (01-29-2017)
Old 01-28-2017, 08:02 PM #17
Hotfoot53 Hotfoot53 is offline
Junior Member
 
Join Date: Jan 2017
Location: Florida
Posts: 47
5 yr Member
Hotfoot53 Hotfoot53 is offline
Junior Member
 
Join Date: Jan 2017
Location: Florida
Posts: 47
5 yr Member
Default Re:ketamine timing and anyone get back to previous job FT?

Quote:
Originally Posted by Littlepaw View Post
Hi Hotfoot,

A word on the ketamine protocols...if you get in a bind and need something added to your routine, weekly ketamine may actually be able to help. The majority of studies are done on the 10 day treatment but there are other methods. My PM now only administers ketamine once a week at his clinic and that seems to be working for many of his patients. For me, it was the build up over time of weekly then bi-weekly, then every 3 weeks, etc that helped break my pain cycle. Now, like Shay, I only go every 3 months for a one session booster. This has been keeping things pretty under control and going once a week was a lot easier on me in the beginning both physically and financially. My cost per session is in keeping with Shay's as well. My infusions run $300.
Thank you littlepaw, that is helpful to add to my info gathering on potential treatments. Idk what I'm doing next...just trying to keep moving and have options researched (at least partway) before I get there! Of course kinda
hoping I'll never get there.
These posts have been really helpful in doing that. Thank you so much for sharing!😊

New question for anyone who feels like jumping in:
I'm trying to get back to my old job (before CRPS). Has anyone gone back to the same job successfully full time?
Thank you all!
Hotfoot53
Hotfoot53 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
RSD ME (01-29-2017), Shay08 (01-29-2017)
Old 01-29-2017, 09:02 AM #18
Shay08 Shay08 is offline
Junior Member
 
Join Date: Sep 2016
Location: Northeast PA
Posts: 86
8 yr Member
Shay08 Shay08 is offline
Junior Member
 
Join Date: Sep 2016
Location: Northeast PA
Posts: 86
8 yr Member
Default

Quote:
Originally Posted by Littlepaw View Post
Hi Hotfoot,

A word on the ketamine protocols...if you get in a bind and need something added to your routine, weekly ketamine may actually be able to help. The majority of studies are done on the 10 day treatment but there are other methods. My PM now only administers ketamine once a week at his clinic and that seems to be working for many of his patients. For me, it was the build up over time of weekly then bi-weekly, then every 3 weeks, etc that helped break my pain cycle. Now, like Shay, I only go every 3 months for a one session booster. This has been keeping things pretty under control and going once a week was a lot easier on me in the beginning both physically and financially. My cost per session is in keeping with Shay's as well. My infusions run $300.
Thanks for this information Littlepaw. It is good to know that with the buildup of time your pain cycle was broken. This is important for anyone starting any ketamine protocol to know. It may not be instant, constant relief. Give whatever protocol you are on a chance to work. Unfortunately this can be difficult for people who don't have insurance that will cover it and are trying to come up with the money to pay for it.

I just met a woman during my last infusion who travels a long distance to get her infusions. She said that her boosters had been reduced to every 6 months and she was doing well, but when they went to every year, she started to have difficulties again. It really is a balancing act for each individual. She also mentioned that not every state will allow the two week protocol or an inpatient protocol. (I don't know how accurate this is.) She decided to travel the long distance to continue her ketamine infusions where they were first started since her results were so good.

Littlepaw, knowing that the protocol you are on has helped many others should be encouraging for those who are still seeking a treatment that may help them.

Shay
Shay08 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Hotfoot53 (01-29-2017), RSD ME (01-29-2017)
Old 01-29-2017, 09:22 AM #19
Shay08 Shay08 is offline
Junior Member
 
Join Date: Sep 2016
Location: Northeast PA
Posts: 86
8 yr Member
Shay08 Shay08 is offline
Junior Member
 
Join Date: Sep 2016
Location: Northeast PA
Posts: 86
8 yr Member
Default

Quote:
Originally Posted by Hotfoot53 View Post
Thank you littlepaw, that is helpful to add to my info gathering on potential treatments. Idk what I'm doing next...just trying to keep moving and have options researched (at least partway) before I get there! Of course kinda
hoping I'll never get there.
These posts have been really helpful in doing that. Thank you so much for sharing!😊

New question for anyone who feels like jumping in:
I'm trying to get back to my old job (before CRPS). Has anyone gone back to the same job successfully full time?
Thank you all!
Hotfoot53
Hotfoot, your new question is a good one. You may want to start a new thread to get everyone's attention on that one.

I was already retired when CRPS developed. However, I can say that I could have probably returned to work with some modifications that would be possible. I would have needed more time off than before the CRPS and I don't think it would have been easy.

It would really depend on the type of job and how well the pain is being managed. If a person is on a lot of meds with side effects that prevent them from driving or operating machinery or that prevent them from concentrating, that would certainly be a deterrent.

There are people who go into remission and I hope you hear from them. (I also hope that you become one of them.) Good luck with your quest to return to work. Remember that there is always hope!

Shay
Shay08 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
RSD ME (01-29-2017)
Old 01-29-2017, 08:10 PM #20
Hotfoot53 Hotfoot53 is offline
Junior Member
 
Join Date: Jan 2017
Location: Florida
Posts: 47
5 yr Member
Hotfoot53 Hotfoot53 is offline
Junior Member
 
Join Date: Jan 2017
Location: Florida
Posts: 47
5 yr Member
Smile

Quote:
Originally Posted by Shay08 View Post
Hotfoot, your new question is a good one. You may want to start a new thread to get everyone's attention on that one.

I was already retired when CRPS developed. However, I can say that I could have probably returned to work with some modifications that would be possible. I would have needed more time off than before the CRPS and I don't think it would have been easy.

It would really depend on the type of job and how well the pain is being managed. If a person is on a lot of meds with side effects that prevent them from driving or operating machinery or that prevent them from concentrating, that would certainly be a deterrent.

There are people who go into remission and I hope you hear from them. (I also hope that you become one of them.) Good luck with your quest to return to work. Remember that there is always hope!

Shay
Thanks Shay- that is a good idea to post a new thread-
I have trouble focusing on tasks in order and it's especially obvious to me when I post here. It's likely the gabapentin and uncertainty of things now. I'll post it. Thanks for the positive response-I will do something- idk what yet...Hotfoot 👣
Hotfoot53 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
RSD ME (01-30-2017), Shay08 (01-30-2017)
Reply

Tags
else-, helpful, hope, spinal, stim


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
UK All Party Parlimentary Group for CRPS Kevscar Reflex Sympathetic Dystrophy (RSD and CRPS) 8 10-01-2015 07:53 AM
New to the group! Diagnosed with RSD/CRPS in 2006 Marci B. New Member Introductions 4 02-02-2015 06:45 PM
Swine flu? YES CRPS is high risk group :( Sandel Reflex Sympathetic Dystrophy (RSD and CRPS) 13 11-08-2009 01:06 PM


All times are GMT -5. The time now is 05:57 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.