[cameron1958]

Hi all!

I don't post allot here because I prefer to lurk and read others post to see if I can learn more about this monster we all have.

Well a short history. I have had RSD for at least 3 yrs. Started in right knee after it was replaced. I have went thru many different pain meds and nerve blocks all with little to no relief. 8 weeks ago decided to get off all narcotics. I was taking 60 mg's of morphine twice daily. My main goal was to get a baseline for how much I really hurt. Tapered off the morphine, withdraw still sucked. anyway after being of them for 3 weeks, found that the pain level manageable most days, 7-8 on bad days. However not being real active either. So had a appt with pain Doc on Monday to follow up on progress of no narcotics. He asked how I was doing and I told him better with each day, told him problems I was having, mainly can't sleep. Pain level ect. His first question was do I plan on staying off ALL narcotics forever? I said that would be great, however don't know where I'll be from day to day with the pain. He then told me he had made nots in my chart for a drug that I had read about but NEVER thought would be something that I would consider taking for RSD. BUPRENORPHINE. It is part of 2 drugs that make up SUBOXONE, which i'm sure many of you know what that is. My first thought was oh no he thinks I;m a drug addict. The look on my face must have said he most part. as much too! He then said hear me out before you say anything. He then explained that there are current studies going on with this drug and how it effects the receptors in the brain in the area of the sympathetic nerves. Well from what I know thats what RSD affects for the most part.
He started me out on 2mg's 3 times daily. Put tablet under tongue and let it dissolve, takes about 1 minute. I knew within 30 minutes it was WORKING. Within 3 hrs I felt better than I had in 3 yrs!! Now 3 days in I still have more energy and pain is at 1-2. I know its way early to say if this will work long term. However this med isn't like most opioids. He told me you don't build up tolerance and have to keep increasing doses, among many other advantages over other narcotics. There are side effects as with all drugs, however so far have not had any. This drug to will cause dependance too.
Bottom line for me is its working, so as long as it does I guess I'm back on taking pills. They also are not cheap, $ 150.00 for 28 days, and I'm a self pay on this stuff due to being work comp case which I received a settlement on with some of the money set aside for the RSD.
Not sure how many here have tried this drug, however I know most of us will try almost anything to get some relief.

[Brambledog]

Thanks Cameron, that's really interesting. Its not one I've heard of, and I don't know if it's available here in the UK from regular docs.... I'll have a read around!

Thanks, Bram.

[Lottie]

Thanks Cameron for posting this. The drug is new to me but I will look into it too. Keep us posted on how you do on it! I wish you all the best! I too was on lots of narcotics for years. Decided to get by on less as you did. The side effects and withdrawal are rough. Take care.

[BraveGirl]

I agree. Very interesting! Especially because it sounds similar to low dose naltrexone (LDN), another drug typically used to help people get off of opioids. They are both in the class of medications called"opioid antagonists." There have been some case reports of LDN being very helpful for people with CRPS.

http://www.nlm.nih.gov/medlineplus/d...s/a685041.html
http://www.nlm.nih.gov/medlineplus/d...s/a605002.html

Originally Posted by cameron1958

Hi all!

I don't post allot here because I prefer to lurk and read others post to see if I can learn more about this monster we all have.

Well a short history. I have had RSD for at least 3 yrs. Started in right knee after it was replaced. I have went thru many different pain meds and nerve blocks all with little to no relief. 8 weeks ago decided to get off all narcotics. I was taking 60 mg's of morphine twice daily. My main goal was to get a baseline for how much I really hurt. Tapered off the morphine, withdraw still sucked. anyway after being of them for 3 weeks, found that the pain level manageable most days, 7-8 on bad days. However not being real active either. So had a appt with pain Doc on Monday to follow up on progress of no narcotics. He asked how I was doing and I told him better with each day, told him problems I was having, mainly can't sleep. Pain level ect. His first question was do I plan on staying off ALL narcotics forever? I said that would be great, however don't know where I'll be from day to day with the pain. He then told me he had made nots in my chart for a drug that I had read about but NEVER thought would be something that I would consider taking for RSD. BUPRENORPHINE. It is part of 2 drugs that make up SUBOXONE, which i'm sure many of you know what that is. My first thought was oh no he thinks I;m a drug addict. The look on my face must have said he most part. as much too! He then said hear me out before you say anything. He then explained that there are current studies going on with this drug and how it effects the receptors in the brain in the area of the sympathetic nerves. Well from what I know thats what RSD affects for the most part.
He started me out on 2mg's 3 times daily. Put tablet under tongue and let it dissolve, takes about 1 minute. I knew within 30 minutes it was WORKING. Within 3 hrs I felt better than I had in 3 yrs!! Now 3 days in I still have more energy and pain is at 1-2. I know its way early to say if this will work long term. However this med isn't like most opioids. He told me you don't build up tolerance and have to keep increasing doses, among many other advantages over other narcotics. There are side effects as with all drugs, however so far have not had any. This drug to will cause dependance too.
Bottom line for me is its working, so as long as it does I guess I'm back on taking pills. They also are not cheap, $ 150.00 for 28 days, and I'm a self pay on this stuff due to being work comp case which I received a settlement on with some of the money set aside for the RSD.
Not sure how many here have tried this drug, however I know most of us will try almost anything to get some relief.

[murgir]

Originally Posted by BraveGirl

I agree. Very interesting! Especially because it sounds similar to low dose naltrexone (LDN), another drug typically used to help people get off of opioids. They are both in the class of medications called"opioid antagonists." There have been some case reports of LDN being very helpful for people with CRPS.

http://www.nlm.nih.gov/medlineplus/d...s/a685041.html
http://www.nlm.nih.gov/medlineplus/d...s/a605002.html

Thank You so much for sharing. I have a low pain tolerance and fear is so great with me being new to this disease. Only slight pain occasionally and I am very depressed and can't take antidepressants. You have made my day