RSD and Ketamine Treatments
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RSD and Ketamine Treatments
byrd45 Mon Jan 05, 2009 8:08 pm
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From: byrd45 (Original Message) Sent: 9/22/2005 11:40 AM
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From: <NOBR>byrd45</NOBR> (Original Message) Sent: 8/24/2005 8:56 AM
Hi Everybody,
I thought this week we could discuss experiences or thoughts on RSD and Ketamine Treatments. I first heard about Ketamine treatments from my doctor about two and a half years ago. He mentioned it but said they were trying to get the FDA here to allow them to use Ketamine in the United States. They were already treating patients with RSD in Germany and were pleased with the results. I also heard from someone that doctors were also researching and using it in Australia, but I am not sure about that having only heard that through the grapevine. It was offered to me by my doctor to fly to Germany to get the treatment but I would have had to raise the money myself because there wasn't any chance at all that Worker's Comp would have paid for it. With the whole war going on in the middle east and the fact that they were putting people in a drug induced coma(the asleep method), my husband and I had many reservations.We decided that even if we could raise the money that neither of us wanted to travel with all the things going on with the war and the drug induced coma scared us both. Anyway I turned them down and my doctor said that they would soon be able to do the procedure in the states and I could just wait until then. That was fine with me and the awake technique was passed by the FDA first in New Jersey and then here and I think that Keith from RSDHope had it done and I believe he said a doctor in Arizona. The FDA will still not allow them to do the asleep method here.Well I was put on the list of people waiting to go in for this new procedure. At first they were hospitalizing people for five day inpatient infusions and then the FDA changed their minds and told them they could only do two day infusions. They call this the awake technique because you are awake and not in a drug induced coma. They also were offering people an outpatient version where you come in the morning have your infusion until afternoon then recovery and then you are allowed to go home until the next day. You were told to bring someone else with you to drive you home.This series is for ten days. I was on both lists and finally they called me for the outpatient version but I was refused by Workers Comp. That is where things stand now.If you would like to add your thoughts or experiences on RSD and Ketamine treatments just add it to this post.
Love,
Robyn
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From: <NOBR>byrd45</NOBR> Sent: 8/24/2005 9:15 AM
Here is another interesting article:
Public release date: 12-Oct-2004
[ language=javascript type=text/javascript> </SCRIPT> Print Article | E-mail Article language=javascript type=text/javascript> </SCRIPT> | Close Window ]
Contact: Sharon Agsalda
medicalnews@bos.blackwellpublishing.com
781-388-8507
Blackwell Publishing Ltd.
Severe pain relief may be possible with a common anesthetic drug
A novel treatment using a common anesthetic drug has shown success in reducing the severe pain caused by Complex Regional Pain Syndrome (CRPS), according to a study published in the September 2004 issue of Pain Medicine. CRPS, a disorder that can be associated with chronic pain resistant to conventional therapies, affects between 1.5 and 7 million people in the United States. CRPS is sometimes also known as Reflex Sympathetic Dystrophy (RSD).
"This pain disorder can be very difficult to treat. Currently-available conventional therapies, at best, oftentimes only make the pain bearable for many CRPS sufferers," said Ronald E. Harbut, MD, PhD, of Penn State Milton S. Hershey Medical Center, corresponding author of the study. "In our retrospective study, some patients who underwent a low-dose infusion of ketamine experienced complete relief from their pain, suggesting that this therapy may be an option for some patients with intolerable CRPS."
Thirty-three patients with unrelenting CRPS were treated using this novel approach developed by Dr. Graeme E. Correll, BE, MBBS, in Mackay, Queensland, Australia. Pain relief and the duration of this relief appeared impressive. After only one treatment, there was complete relief in 76% (25) of the group. 54% of the patients remained free of pain for more than three months, 31% for more than six months. Although the relief of pain did not last indefinitely, it was noted that following a second treatment given to 12 of the patients, the outcome was improved. In this retreated group 58% remained pain free for more than a year and almost 33% experienced relief for over three years. The most frequent side effect was a feeling of inebriation with less frequent effects including hallucinations, dizziness, light-headedness and nausea.
"Ultimately, we want to find a way to improve the quality of life for those who suffer with intolerable and endless CRPS -- that is our hope," said Harbut. Although optimistic about these early findings, "Certainly more study is needed to further establish the safety and efficacy of this novel approach." (A large clinical study is currently planned and under development at Penn State Hershey Medical Center.)
Rollin M. Gallagher, MD, MPH, Editor-in-Chief of Pain Medicine, notes, "How medical breakthroughs occur is usually a story of human ingenuity and perseverance fueled by compassion and intellect. Dr. Correll's promising innovation, forged by necessity in tiny resource-poor clinics in the jungles of Papua-New Guinea and Northern Australia and carefully shepherded to publication by his co-authors, may herald an effective treatment for one of mankind's most enigmatic and agonizing diseases. Prospective, controlled studies must follow to establish its safety and efficacy."
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From: byrd45 Sent: 9/22/2005 11:42 AM
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From: <NOBR>irisheyes0720</NOBR> Sent: 8/25/2005 11:18 AM
Hi Robyn:
I tried this Ketamine treatment for a while but the affects of it didn't last long at all. The treatment I tried was a cream that you put on the affected part and it number it. 45 minutes later it felt like pins and needles in your leg and then the pain was back. It is a very expensive treatment and not covered by most insurances according to my former doctor. We called it quites after a month of using the cream. Irish
--------------------------------------------------------------------------------
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From: <NOBR>FiNdAcUrEnOw</NOBR> Sent: 8/26/2005 8:01 AM
Hi Robyn,
I have heard a lot about the ketamine treatments. Probably about a year ago. It's also mentioned in the "Living with RSD book" I have heard unfortunately that most discontinued the treatment because it caused extreme hallucinations. I have used the Ketamine Ointment topically andit worked very very well for me. Stopped the burning pain. It did last a pretty long time and if it seems to wear of you can put another application on. Unfortunately I had to be one of the few who developed an allergic reaction to it, I got a real bad, itchy, raise, almost welt like, rash and had to discontinue it. Darn! I do recomend to all, to at least give it a try, it was wonderful for me while it lasted. It is very expensive, as it has to be hand made by a compound pharmacy by a specialized pharmacist. It has about 5 different serious drugs in it, and at least for me, it worked. And believe it or not, Workers Comp approved it. Of course they still havent paid the pharmacy, but they did approve it. Gotta love Workers Comp. NOT! If others are interested in trying it, I would suggest you bring everything you can find on it, as far as studies that it does/has worked for RSD to your doctor. The Pharmacy I was getting it from informed me that very few people know of this compound, but in their experience it was very effective for RSD. In my experience if your doctor can convince the insurance compnay that something is beneficial to their patient, and their is no generic to match it, often times the insurance company will agree to pay for it, but the doctor has to be willing to fight for you. Otherwise I would still say it is worth the money to buy it at least once to see if it works for you. I don't know about most people but even one day of stopping that evil burn (and even stopped the stabbing I have) is worth every penny. And actually I got a pretty large tub of it and it was around $114.- One might want to ask for a smaller amount to start off and it could be half that price. Good Luck and if anyone trys it or has tried it, I would love to know if it works for them.
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Recommend Delete Message 5 of 5 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 8/26/2005 9:37 AM
Hi everyone,
I also heard of the cream, but this is the first time I have heard from someone who actually tried it. It sounds like everything else some things work great for some but not others.I know someone who went in for the inpatient treatments but he said it was awful with the hallucinations and he didn't finish the treatment. I know another person from another online group and she said that the treatments were working for her and in the middle of them the insurance decided they didn't want to pay for it anymore. All the benifits she had gotten wore off after that. Unfortunately from what I have heard the treatments don't last indefinitely,but I have heard people considerably cut there pain levels and in some no pain levels afterwards. That is a wonderful thing I just wish it was a permanent fix.
Love,
Robyn
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From: catedouglas Sent: 8/2/2006 10:20 AM
This message has been deleted due to termination of membership.
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From: byrd45 Sent: 8/8/2006 11:59 AM
Hi Cate,
Which treatment did you have? Was it inpatient or out? I am so glad it helped you for the time it did. How long did it last? I hope you don't mind the questions but you are one of the few I have talked to who have had it and am curious. How are you doing now? I hope it had some lasting effects for you.
Love,
Robyn
Recommend Delete Message 1 of 4 in Discussion
From: byrd45 (Original Message) Sent: 9/22/2005 11:40 AM
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Recommend Delete Message 1 of 5 in Discussion
From: <NOBR>byrd45</NOBR> (Original Message) Sent: 8/24/2005 8:56 AM
Hi Everybody,
I thought this week we could discuss experiences or thoughts on RSD and Ketamine Treatments. I first heard about Ketamine treatments from my doctor about two and a half years ago. He mentioned it but said they were trying to get the FDA here to allow them to use Ketamine in the United States. They were already treating patients with RSD in Germany and were pleased with the results. I also heard from someone that doctors were also researching and using it in Australia, but I am not sure about that having only heard that through the grapevine. It was offered to me by my doctor to fly to Germany to get the treatment but I would have had to raise the money myself because there wasn't any chance at all that Worker's Comp would have paid for it. With the whole war going on in the middle east and the fact that they were putting people in a drug induced coma(the asleep method), my husband and I had many reservations.We decided that even if we could raise the money that neither of us wanted to travel with all the things going on with the war and the drug induced coma scared us both. Anyway I turned them down and my doctor said that they would soon be able to do the procedure in the states and I could just wait until then. That was fine with me and the awake technique was passed by the FDA first in New Jersey and then here and I think that Keith from RSDHope had it done and I believe he said a doctor in Arizona. The FDA will still not allow them to do the asleep method here.Well I was put on the list of people waiting to go in for this new procedure. At first they were hospitalizing people for five day inpatient infusions and then the FDA changed their minds and told them they could only do two day infusions. They call this the awake technique because you are awake and not in a drug induced coma. They also were offering people an outpatient version where you come in the morning have your infusion until afternoon then recovery and then you are allowed to go home until the next day. You were told to bring someone else with you to drive you home.This series is for ten days. I was on both lists and finally they called me for the outpatient version but I was refused by Workers Comp. That is where things stand now.If you would like to add your thoughts or experiences on RSD and Ketamine treatments just add it to this post.
Love,
Robyn
Reply
Recommend Delete Message 2 of 5 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 8/24/2005 9:15 AM
Here is another interesting article:
Public release date: 12-Oct-2004
[ language=javascript type=text/javascript> </SCRIPT> Print Article | E-mail Article language=javascript type=text/javascript> </SCRIPT> | Close Window ]
Contact: Sharon Agsalda
medicalnews@bos.blackwellpublishing.com
781-388-8507
Blackwell Publishing Ltd.
Severe pain relief may be possible with a common anesthetic drug
A novel treatment using a common anesthetic drug has shown success in reducing the severe pain caused by Complex Regional Pain Syndrome (CRPS), according to a study published in the September 2004 issue of Pain Medicine. CRPS, a disorder that can be associated with chronic pain resistant to conventional therapies, affects between 1.5 and 7 million people in the United States. CRPS is sometimes also known as Reflex Sympathetic Dystrophy (RSD).
"This pain disorder can be very difficult to treat. Currently-available conventional therapies, at best, oftentimes only make the pain bearable for many CRPS sufferers," said Ronald E. Harbut, MD, PhD, of Penn State Milton S. Hershey Medical Center, corresponding author of the study. "In our retrospective study, some patients who underwent a low-dose infusion of ketamine experienced complete relief from their pain, suggesting that this therapy may be an option for some patients with intolerable CRPS."
Thirty-three patients with unrelenting CRPS were treated using this novel approach developed by Dr. Graeme E. Correll, BE, MBBS, in Mackay, Queensland, Australia. Pain relief and the duration of this relief appeared impressive. After only one treatment, there was complete relief in 76% (25) of the group. 54% of the patients remained free of pain for more than three months, 31% for more than six months. Although the relief of pain did not last indefinitely, it was noted that following a second treatment given to 12 of the patients, the outcome was improved. In this retreated group 58% remained pain free for more than a year and almost 33% experienced relief for over three years. The most frequent side effect was a feeling of inebriation with less frequent effects including hallucinations, dizziness, light-headedness and nausea.
"Ultimately, we want to find a way to improve the quality of life for those who suffer with intolerable and endless CRPS -- that is our hope," said Harbut. Although optimistic about these early findings, "Certainly more study is needed to further establish the safety and efficacy of this novel approach." (A large clinical study is currently planned and under development at Penn State Hershey Medical Center.)
Rollin M. Gallagher, MD, MPH, Editor-in-Chief of Pain Medicine, notes, "How medical breakthroughs occur is usually a story of human ingenuity and perseverance fueled by compassion and intellect. Dr. Correll's promising innovation, forged by necessity in tiny resource-poor clinics in the jungles of Papua-New Guinea and Northern Australia and carefully shepherded to publication by his co-authors, may herald an effective treatment for one of mankind's most enigmatic and agonizing diseases. Prospective, controlled studies must follow to establish its safety and efficacy."
First Previous 2-4 of 4 Next Last Delete Replies
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From: byrd45 Sent: 9/22/2005 11:42 AM
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From: <NOBR>irisheyes0720</NOBR> Sent: 8/25/2005 11:18 AM
Hi Robyn:
I tried this Ketamine treatment for a while but the affects of it didn't last long at all. The treatment I tried was a cream that you put on the affected part and it number it. 45 minutes later it felt like pins and needles in your leg and then the pain was back. It is a very expensive treatment and not covered by most insurances according to my former doctor. We called it quites after a month of using the cream. Irish
--------------------------------------------------------------------------------
Start your day with Yahoo! - make it your home page
Reply
Recommend Delete Message 4 of 5 in Discussion
From: <NOBR>FiNdAcUrEnOw</NOBR> Sent: 8/26/2005 8:01 AM
Hi Robyn,
I have heard a lot about the ketamine treatments. Probably about a year ago. It's also mentioned in the "Living with RSD book" I have heard unfortunately that most discontinued the treatment because it caused extreme hallucinations. I have used the Ketamine Ointment topically andit worked very very well for me. Stopped the burning pain. It did last a pretty long time and if it seems to wear of you can put another application on. Unfortunately I had to be one of the few who developed an allergic reaction to it, I got a real bad, itchy, raise, almost welt like, rash and had to discontinue it. Darn! I do recomend to all, to at least give it a try, it was wonderful for me while it lasted. It is very expensive, as it has to be hand made by a compound pharmacy by a specialized pharmacist. It has about 5 different serious drugs in it, and at least for me, it worked. And believe it or not, Workers Comp approved it. Of course they still havent paid the pharmacy, but they did approve it. Gotta love Workers Comp. NOT! If others are interested in trying it, I would suggest you bring everything you can find on it, as far as studies that it does/has worked for RSD to your doctor. The Pharmacy I was getting it from informed me that very few people know of this compound, but in their experience it was very effective for RSD. In my experience if your doctor can convince the insurance compnay that something is beneficial to their patient, and their is no generic to match it, often times the insurance company will agree to pay for it, but the doctor has to be willing to fight for you. Otherwise I would still say it is worth the money to buy it at least once to see if it works for you. I don't know about most people but even one day of stopping that evil burn (and even stopped the stabbing I have) is worth every penny. And actually I got a pretty large tub of it and it was around $114.- One might want to ask for a smaller amount to start off and it could be half that price. Good Luck and if anyone trys it or has tried it, I would love to know if it works for them.
Reply
Recommend Delete Message 5 of 5 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 8/26/2005 9:37 AM
Hi everyone,
I also heard of the cream, but this is the first time I have heard from someone who actually tried it. It sounds like everything else some things work great for some but not others.I know someone who went in for the inpatient treatments but he said it was awful with the hallucinations and he didn't finish the treatment. I know another person from another online group and she said that the treatments were working for her and in the middle of them the insurance decided they didn't want to pay for it anymore. All the benifits she had gotten wore off after that. Unfortunately from what I have heard the treatments don't last indefinitely,but I have heard people considerably cut there pain levels and in some no pain levels afterwards. That is a wonderful thing I just wish it was a permanent fix.
Love,
Robyn
Reply
0 recommendations Message 3 of 4 in Discussion
From: catedouglas Sent: 8/2/2006 10:20 AM
This message has been deleted due to termination of membership.
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Recommend Delete Message 4 of 4 in Discussion
From: byrd45 Sent: 8/8/2006 11:59 AM
Hi Cate,
Which treatment did you have? Was it inpatient or out? I am so glad it helped you for the time it did. How long did it last? I hope you don't mind the questions but you are one of the few I have talked to who have had it and am curious. How are you doing now? I hope it had some lasting effects for you.
Love,
Robyn
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