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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


I have taken ketamine both as IV infusions and in pill form. Unfortunately neither worked very well for me. I did three rounds of IV infusions. The first was a three day trial. I did get relief but it only lasted for 24 hours. The second round was five days with two infusions twice a day and I also received lidocaine and magnesium. It worked a little better and I had about 50% relief for two weeks and I also began taking ketamine in oral form at this time--taking 100mg twice a day. The last round was also a five day trial with ketamine twice a day and lidocaine and magnesium. I continued the ketamine tablets for another three months. I only got relief for about 24-48 hours with the last infusion. With that said there are other patients at the clinic I went to that had great responses to ketamine. Like everything else with RSD it is very individual.
Currently I am on a combination of anti-epileptics (Topamax and Zonegran). I am allergic to neurontin and lyrica. anti-inflammatories (Tolmentin), anti-depressants (cymbalta) , pain killers (nucynta, methadone, fentanyl patches), bone builders (calcium, miacalcian) all for RSD then I am also on others for sjogrens and palindromic rheumatism and other health issues. Way too many pills and not near enough pain relief!!!

Cricket
I am having the ketamine done at The Cleveland Clinic. Unfortunately I am currently taking no pain meds. I do as little as possible, I stay on the main floor, I use an electric blanket on my legs and a heating pad on my back and when I can't stand it any longer I give in and take an advil which doesn't do much for the sharp/burning pain but it at least helps the spasms. I just have to make sure I don't take it a lot and drink a ton of water to keep it from killing my kidney but at this point I just have to take one day at a time and RSD is the problem right now if my kidney fails from taking the advil I'll deal with it when the time comes. If I get really desperate I have Percocet I can take but last time I took it the side effects were worse than the amount of pain it relieved, which I'm not sure why because I haven't had problems with it in the past but whatever. I question if it isn't a different generic than what I'm used to but I don't really know.

I was originally having the SCS when I was referred to Cleveland. I had been seeing a doc in Columbus but insurance wanted to pay more money for Cleveland Clinic to put in SCS so I was sent there and he said what are you doing even thinking about a SCS. If it is RSD you have the SCS will probably make it even worse not to mention there are all kinds of complications with it and you are way to young to even think about that. (I was 25 at the time). Now with everyone I've talked to there is no way I would try the SCS before trying the ketamine. Ketamine sounds a lot more likely to work with less complications/risk of making RSD worse. I do have a TENS unit which works very similar to a SCS except it is completely external so it doesn't require surgery so there is no chance of it making the RSD worse. I will tell you to begin with it helped a lot more than anything else but the longer I have had it the less relief I get and I never used it everyday. I used it at most 3 times a week because of being allergic/hypersensitive to the adhesive (these electrodes/patches are supposed to behypoallergenic but if I were them to often I break out). Now I use it once or twice a week and I get some relief but very little. I mainly use it to get me through the church service. I put it on right before I leave and I take it off as soon as I get home. My biggest concern with the ketamine is there is a chance it could make my seizures worse, there is a chance it could improve them, or not effect them at all and how do you know until you try!

I can also tell you from experience if I had cancer and there is no way I would do chemo. I wish it was cancer I was dealing with right now because it is a lot easier to handle than RSD and the pain is a lot less severe. At least with cancer thaere is a definate end in sight one way or the other. With RSD you pretty much just have to suffer through it, ther is no cure, no mostly reliable treatment, and it isn't deadly. With cancer at least you know either it will go into remission or it will kill you.

Unfortunately, I called the doc office today to verify the ketamine plan because when I saw the doc last he said if it was approved it would be once a week for 3 weeks and then possibly the monthly boosters but when they called and told me about the approval they only told me the one date and the letter I got in the mail didn't mention the other 2 weeks either so I called to make sure today and they said that insurance will only approve one infusion at a time so I have to go get this one and see how it goes and how I respond then the doc has to order another one and resubmit it to insurance and have to wait to get it approved again and then try to fit into the schedule so I'm not sure how well this is going to work because from what I have found the issue with the ketamine is getting it to "hold" and relief to last which is why they usually do infusions back to back and close to gether because they have found it is more likely to last but at this point I'll take what I can get. If the boosters work I don't care how long I have to keep having them. The original plan was infusion 1/week for 3 weeks and then monthly boosters for 3-6 months and re-evaluate and see where we are and what if anything needs changed but now I'm not sure what is going to happen wiith all that because insurance is in control not the doc nor me.
Sorry this is so long. Everyone hang in there!
cardshark
Hi Deb. I had minor foot surgery in 99 and when the doc was done he said he had slipped and made a small mistake by cutting the artery he had to get another doc to tie a knot in the artery but it leaked into my foot and the leakage had no way out of the foot boy did the foot blow up big from all the blood in it. The doc opened it back up one month later and it was full of something he said that looked like red rock salt good old dried blood. well then i changed docs the new doc said it was rsd and got me into a pain clinic was the first of jan. of 2000 since then life has sucked. Back then there was no info on rsd I had to get a computer to find out anything about it.
Someone on here was talking about ketamine pills I was wondering what they do are they for pain or to help the rsd. I didnt think a pill could reboot the pain centers. I am thinking about getting a scs my pain doc says they work great and i am about out of different kinds of pain meds. I am on meth and percs. now. Oh what is the infusion is a tourney put on then the limb gets the med put into it for a while then released into the body. I have had somehting like that but it had a different name and it didnt work or do any good. Seems like most people that have had scs put in wind up having bad luck with them and get them taken out. well thanks for listening rsdbadfoot
Hi Deb. I had minor foot surgery in 99 and when the doc was done he said he had slipped and made a small mistake by cutting the artery he had to get another doc to tie a knot in the artery but it leaked into my foot and the leakage had no way out of the foot boy did the foot blow up big from all the blood in it. The doc opened it back up one month later and it was full of something he said that looked like red rock salt good old dried blood. well then i changed docs the new doc said it was rsd and got me into a pain clinic was the first of jan. of 2000 since then life has sucked. Back then there was no info on rsd I had to get a computer to find out anything about it.
Someone on here was talking about ketamine pills I was wondering what they do are they for pain or to help the rsd. I didnt think a pill could reboot the pain centers. I am thinking about getting a scs my pain doc says they work great and i am about out of different kinds of pain meds. I am on meth and percs. now. Oh what is the infusion is a tourney put on then the limb gets the med put into it for a while then released into the body. I have had somehting like that but it had a different name and it didnt work or do any good. Seems like most people that have had scs put in wind up having bad luck with them and get them taken out. well thanks for listening rsdbadfoot





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