DEAR DR. GOTT: I was compelled to respond to the letter from a 39-year-old mother with RSD who was contemplating Ketamine infusion. I, too, have suffered with RSD for almost 25 years. I was involved in an accident in 1986 where someone ran a stop sign and turned head-on into my car. The accident did not appear major, but the effects were. I went through several series of spinal injections and many other treatments with a variety of doctors.
I would like to share what I discovered helps me. RSD usually responds to temperature. For me, heat has greatly improved my life. My husband and I moved from New Jersey to southwest Florida fewer than two years ago for the sake of my health, and it made a significant difference. I found that aqua-aerobics are also important in improving my health, so having a salt pool in my backyard is a godsend.
As for medication, I’ve been taking Ultram (100 milligrams twice a day) and 50 milligrams of Nucynta (a newer medication that has a narcotic and an analgesic). Every week or so, I switch from the Nucynta to a Fentanyl patch, which lasts for three days, or one Vicodin a day. This has finally kept the pain under control. I do have to take a nap every day to recharge my batteries.
The only thing I have heard about the Ketamine treatment involves being put into a coma for a week. She needs to do some research about the subject before considering it as an alternative.
There are many of us RSD sufferers out there, and doctors need to be educated about it. So very few really understand its complexities, and misdiagnoses are common. After 25 years, I feel somewhat like an “expert”!
DEAR READER: I have previously written about RSD/CRPS (Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome). Those interested in reading the articles can find them on my website at www.AskDrGottMD.com/rsd-helped-by-hydrotherapy/ and www.AskDrGottMD.com/rsd-chronic-pain/.
Ketamine infusion has three main techniques. Two are approved in the United States, and the third is not. I will start with the third, because it is the type you mentioned. It involves putting the patient into a coma for five to seven days, during which high doses of Ketamine are given intravenously. It is available outside the United States, but it is expensive, not to mention the cost of travel, etc. More research on this method is necessary.
The following two techniques are allowable in the United States. The first is an outpatient procedure of low-dose Ketamine infusion. Each patient is different, but I will describe what is considered to be a fairly typical experience. Repeated infusions are done over a period of days, weeks and months. Each infusion lasts between four and six hours. The first two weeks often involve daily infusions. This regimen is then tapered down to two treatments every other week for four weeks, followed by one treatment every other week for four to eight weeks. Finally, a maintenance infusion is given once or twice every three months.
The final option is low-dose in-hospital infusion. This treatment is given with a combination of Ketamine and clonidine. Daily infusions are typically given over a five-day period.
Ketamine infusions are recommended only for RSD/CRPS sufferers who don’t achieve adequate pain relief through other methods. You are definitely correct that anyone considering this option needs to do plenty of research, including picking the right physician and hospital/clinic to perform the procedure, determining the cost, finding if the procedure is covered by insurance and more.
I recommend anyone interested in learning more about this condition visit the American RSDHope website at www.RSDHope.org. It is a 501(c)(3) nonprofit organization started by an RSD sufferer and his family. You can also find more information on www.MayoClinic.com, as well.