You're welcome. Happy to help! I remember being where you are now and reading as much as I could, yet thinking how nice it would be to talk to someone else who had already been through it (it's a scary treatment at first). So now I always try to help others considering ketamine whenever I can, particularly now that I am the only one left on the forum who has had significant experience with ketamine. While it is far from perfect, ketamine really has been a life saver for me and for many other patients that I know. While I don't know anyone else who has used it for Lupus, if you have neuropathic pain -- especially with central sensitization (which is very likely after all this time) -- I think it has a good chance of helping you, too! Plus it has the added bonus of helping with depression, which many of us with long standing chronic pain suffer from, too. Interestingly, the ketamine depression protocol did nothing for me, but the pain protocol put my depression in complete remission. Whether it is entirely the result of the ketamine, the decrease in pain, or both, I'm not sure (though I suspect it is a combination of the two), but I remained in remission until just recently, when my CRPS spread and the pain became overwhelming once again.
There are many different protocols out there, but the ones that I mentioned (multi-day 4h outpatient vs multi-day 24h inpatient) are the most commonly used protocols for CRPS, which is what ketamine has been most studied for in the pain world, and thus is what most of the pain protocols are based off of. And out of the two, the outpatient infusions seem to be more common (I have no personal experience with the inpatient ones). In the end, total dose matters more than total time of infusion (or so they say), but you can only run the ketamine so fast without getting serious side effects, which is why the 1h infusion makes me suspicious.
The typical ketamine infusions for pain, whether inpatient or outpatient, are considered low dose infusions. High dose ketamine infusions (again, inpatient or outpatient), which are still at sub-anesthetic levels, are only routinely done a few places in the country that I know of. Ketamine comas are not currently available in the US, but are being done in Mexico and Germany, and I know CRPS patients who have traveled to those countries and had them done when all else has failed (most with astonishing results).
I can understand being concerned about
side effects, as I was at first, too. The main side effects I have found with the low dose infusions are sedation, dizziness, blurred vision, nausea, and sometimes more vivid dreams. But as long as I get the midazolam, in particular, during the infusions, I have never had any difficulty with hallucinations or dysphoria. The only time that I ever experienced something like that was when I was in the hospital after a surgery and was rapidly (i.e. over the course of about
3 seconds) administered 50 mg of ketamine, at once, by itself, over and over again every hour for about
6 hrs (all because the anesthesiologist refused to give it by slow infusion, as my doctor had ordered). I must admit, that
was pretty terrifying (plus at one point I couldn't breathe, which didn't help, as it made me think I was dying -- literally one of the worst experiences of my life), but I don't think you have to worry much about
anything like that with the low dose infusions, especially if you are given supplemental meds (which I would definitely push for if they do not give them automatically). Depending on the dose they use, you'll likely just feel pretty out of it/lousy. You will also be monitored the entire time (heart rate, ECG, respiratory rate, blood pressure, pulse-ox) by a nurse who will be in the room with you, so if you are experiencing any concerning side effects, by all means speak up!
I also typically don't fit the "one size fits all" type approaches with treatments, which is why I love my doctor so much. He starts with the standard protocol, but then tailors the dose, frequency, and addition of adjunct medications (in addition to those used to prevent/treat side effects) to the individual patient based on their response, which in my opinion, is how it should be, although surprisingly, it doesn't always work that way. And I also travel quite a distance to see my PM/for my infusions (he is located in a different state, 2 hrs away from my home). So I am quite familiar with the bed in the back of the car thing! ;-) At the time no one in my state was really using ketamine for pain, and my case is quite complicated, so I needed someone with a lot of experience, and I am so glad that I was referred to him. It is totally worth the long drive. Not only is he super knowledgeable, but he really, really cares about
his patients -- a quality which I have found to be rare amongst PM's (and honestly, many doctors, for that matter). He literally gave me back my life, and has been a Godsend not only with the ketamine, but his whole approach to the treatment of my pain.
Anyways, good luck tomorrow! I hope all goes well, and that you get some relief! Please let us know how it went once you are rested and feeling better!
Oh, and if you want to do more reading about
ketamine protocols, efficacy, etc, a really excellent resource is the Reflex Sympathetic Dystrophy Syndrome Association's online library section on ketamine: /rsds.org/existing-papers/#Ketamine
. Most of the papers you will find pertain to CRPS/RSD, but you will get the idea. It's helpful just for learning about
what's out there/currently being done in regards to ketamine therapy for pain.
Post Edited (skeye) : 12/13/2017 2:06:51 AM (GMT-7)