Hi All My RSD Friends,
I thought I would ask my friends here a question since this is the best place to get accurate and supportive help real quick. I have been waiting for years for Ketamine IV with Dr. S. and I just found out last week that his office is telling everyone they must be off all opiods before they can get Ketamine treatment because they will cross each other out and it will not work as well or not at all??? I am stumped since I have not heard this one until now and have been waiting for treatment for over 3 years now (due to waiting and legal junk). Has anyone else heard about this problem from any of the other docs. I am on opiods now and have been for years and cannot get off them because of severe rsd pain so I was told to get off them before my appt there in August 2010. Any ideas/suggestions would be appreciated. Thanks so much for your help.
kathy d

hi Kathy,

My daughter had the infusions with Dr. K. He weened her off of them AFTER the Ketamine infusions. I would think it would be dangerous not being weened off the meds. Hopefully, they will do that for you. What is their protocol?

Sandy

Kathy I have not heard this from anyone, but it would make sense. You would know if the ketamine was working and how well it takes away pain if you are not on other narcotics. To me why would I go thru ketamine and stay on narcotics. I did hear if you are on narcotics you dont come off them because you dont want to change anything which never made sense to me. If on narcotics for years I would think you would have to come off gradually depending on which narcotics you are on. I know methadone can last in your system 4-6weeks after coming off of it. Other narcotics dont take that long but you dont want to go thru withdraw by coming off too quickly. I have also been on narcotics, off and on again but have always weaned slowly. Good luck and let me know what you find out- i still have a year and 1/2 wait momof4

I just finished my first 2 months of ketamine treatments with Dr. Getson in NJ. I didn't change anything about my meds before starting the treatments. But I did start to taper, and completely go off of my opiods, while receiving the treatments.

I don't think they cross each other out. But perhaps you would be able to tell more easily whether you were getting a lot of pain relief from the ketamine if you were off all meds.

Because I had such a terrible time with my head with my RSD, I knew after my first infusion that ketamine worked for me. Before ketamine, I could not tolerate any noise or vibrations at all. No TV, radios, lawn mowers, leaf blowers, etc. Immediately after the first infusion, I could listen to the radio in my dad's car without pain. It was amazing!

I tried to taper off my fentanyl patches on my own. But I needed a script for Suboxone because I got really, really sick. Even when the Suboxone was done, I still had symptoms of withdrawal for a few weeks afterwards. If you have been on opiods for a long time I would advise you to talk to your doctor before trying to go off of them. I never expected to have such a hard time, especially with my stomach.

If you have any questions, let me know. Good luck XOXOX Sandy

I too have been having ketamine infusions also with Dr Getson for 2 years now and still take all my meds including opiods normally as I always have, if I didnt have them I wouldnt last a day. I really didnt even know other doctors make you come of your meds for the infusions. I have seen many patients still on there meds and the ketamine and it still works wonders for them including myself. I guess every doctor has their own protocals but its not fair to make the patient suffer either. Like Sandy said I would really talk to a doctor about how to come off them as withdrawal makes everything much worse and you sure dont need to go through all that if its at all possible.

Niki

I agree, I have come off medication after the whole procedure was over including the boosters. I have done 3 - 5 day inpatient infusions and it my case it was not an option. A matter of fact that withdrawel is such a trauma to the body as it is I go the impression that it would interfere with the outcome of the infusion itself. My doctor and I did discuss it and he did say some people who have not been on meds. for long enough to have serious withdrawel problems do and are able to get off during a inpatient procedure. I don't know how it would relate to the 10 day outpatient protocal. So, I quess it depends on how long you have been on narcotics or other dependant medication. I have been told if a person has taken dependant medication for more than 6 - 8 months then your body will begin to have problems with withdrawel.

I get the impression that the Pain Managment World is becoming very strick with pain medication in general. I have tried to change doctors because I have been traveling to a doctor for 7 years, but now that I have choosen not to do any more invasive procedure, at least not in the very near future, so for just maintenance I tried to get closer to home. I have spoke to a few in my general area, I would still have to travel 30 miles, I live in a rural area, when they ask what meds. I take and I do not take a lot believe me I have been told "the doctor would prefer not to write percricptions for narcotics".. So, what does that tell us....

There are medications that really do help with withdrawel maybe ask Dr. S to prescrip it for you now so you don't have a problem with the withdrawel. It's called Subotex(spelling) and it works very well. The doctor does have to have a special license to precrip it.


Good Luck you have waited so long.....

Gabbycakes...

Thanks to all of you for your help during this time I need ya the most. As always you guys always help me when I don't know what to do. I guess I did not give you all enough info. about my situation. I have been on Fentanyl 25 mcg for over five years now. I had my other neurologist whom I see every month (and Dr. S every 6 months) and she told me to let the patch just fall off and I will be done with it. I looked at her like she had two heads and said "Are you crazy?" I knew I needed a lower dosage of Opiods until it was almost gone and she said I would be fine. So, I waited until the patch wore off and lasted 10 days until I thought I was going to die. The withdrawls were so horrible I realized how desperate people must get going off drugs when they are hooked. I could not take it any longer and tried to get my primary doc to help and it was a weekend so I could not get him and went to theER where the doc there told me I was in withdrawl and to put the patch back on. I was devastated since I was trying to get off them and not back on it. I went back to the doc and she said I should go four days and then change the patch, then five, etc... I am trying that now and have gotten to the fourth day before I have to change it from withdrawl and pain. I called Dr. S office and they suggested using Neurontin(or Lyrica) three times a day along with Ibuprophen three times a day and Cymbalta once at night and that should help me get off the Fentanyl. I tried Cymbalta for 8 days and it was horrible stuff. I had increased pain all around, severe nausea, could not eat, could not sleep, etc...I could not move off my bed for 8 days and stopped taking it cause of the severe side effects. I am so much better off of it. So now I have to try the Neurontin which I did years ago along with Cymbalta and had the same affect as I had two weeks ago. I just cannot take that stuff. I had asked my doc about Suboxone and she said no cause it messes up your mind. My mind is already a mess I thought. She is clueless to how to get off the Fentanyl. I am at a loss myself now. I will try the Neurontin in two weeks again to see what happens. I have to see Dr. S beginning of August too. I am so frustrated because I can't get off the Fentanyl due to severe pain I have from RSD and withdrawl pain. My pain like others is better in the summer so I am trying to do all this in the summer as the winter I am a mess and can barely do anything. I think I need to switch to oral opiods (like the ER doc said) and taper off them in 2-3 months and then be ready for KEtamine (if the judge approves it). I just hate taking any medicine. I never even took Tylenol before this stuff happened. Any ideas? I guess I will try the Neurontin and then see Dr. S in August. Thanks all for your help. You guys are the best.
kathy d

I went down to 12 mcg Fentanyl patches from the 25 mcg. You can cut them in half after a week or so to reduce the strength.

But no matter how hard I tried, I still needed Suboxone to help me with the withdrawal. And I think even when that was done, I could have used it for another several weeks. I was a mess - tired, lost a lot of weight, sad, etc. At first I thought it was from the ketamine infusions, because I was doing them at the same time. But now I am fairly certain that it was withdrawal - which kicked in after I ran out of Suboxone. It took me a REALLY long time to feel normal again when I stopped the Fentanyl. You are not the only one!!

Suboxone didn't mess with my mind at all - it was the ONLY time when I felt normal during the time after stopping the Fentanyl. There is a way you can find docs that are able to write scripts for Suboxone. If you do a web search for Fentanyl withdrawal you will find it. Or perhaps ask your pharmacist. I wish I had taken it for longer than I did, because it made such a dramatic difference in how I felt!!

So sorry you are going through this. Hang in there....XOXOX Sandy

Hi Sandy,
Thanks for your help and support. This is such a great forum and we get great information when we need it. Did your doctor tell you to cut the Fentanyl patch in half??? I almost had a heart attack when I read that because cutting them in half can cause an overdose because the insides of it are in gel form and you could put to much or to little in whichever side you cut and put on your skin. Wow, that is scary. You are lucky you are alive to tell me about it. A ? I have for you is how long were you on the Suboxone? You said you thought you needed it longer. I was just curious how long it takes to wean off this stuff. I am giving my body a three week break and then trying the Neurontin (again) and praying I don't have bad side effects like I did years ago. I see Dr. S beginning of August so I will be able to tell him all the things and he can direct me in the right direction. Thanks again for all your help. And thanks to all for your great answers. It helped me so much. It is nice to know we are not the only ones going through this mess.
take care,
kathy d

Kath,

Your docs instructions are confusing to me and I would be concerned....getting to theraputic doses of Neurontin and Cymbalta SHOULD take weaning up and down too