Ketamine Infusions

I have extreme nerve pain on the right side of my body caused by lupus. My Rheumatologist has recommended I try Ketamine Infusions to see if it will reset the pain resceptors in my brain. Has anyone tried Ketamine, if so what was your experience?

Hi Melissa,

As Susie mentioned, I have been receiving ketamine infusions for the past 2 1/2 yrs to help control my pain from CRPS. I have written about it extensively in other posts, the most recent being a thread called "Ketamine Infusion Poll," currently located on page 3 of the forum. Here is the link: /www.healingwell.com/community/default.aspx?f=16&m=3932923

If you have any additional questions after reading that, I would be more than happy to answer them. Most of my experience with ketamine is for CRPS, as that is what I and the vast majority of my doctor's patients have, but ketamine has been incredibly helpful for me. However a lot depends on your doctor's experience, as the protocol really needs to be tailored to each individual patient (the same ketamine dose, adjunct meds, and number/frequency of booster infusions are not always appropriate for every patient). Also, unless you are doing high dose infusions, which are only done a few places in the country (and to my knowledge, only for CRPS), do not expect it to be a "one time fix" that puts you into remission and keeps you there for a year or more. Most low dose infusion patients typically need booster infusions every 2-3 mo or so after the initial series. And as I think I mentioned on the other thread, concurrent medications (particularly opioids) can also effect the efficacy of the infusions...

Skeye

Post Edited (skeye) : 12/12/2017 4:18:04 PM (GMT-7)

Melissa,

I totally understand just wanting to reduce medications and improve quality of life -- those were my goals as well, and both have been successful. I was pretty much non-functional with little to no quality of life due to severe pain prior to starting the ketamine, and was also on massive doses of opioids (which also did very little for me). With the infusions, I was able to maintain a somewhat normal life, and was able to stay off of all opioids for 2 yrs after having stopped them prior to starting my infusions (although I still needed intranasal ketamine for breakthrough pain and low dose naltrexone in between infusions). I'm still doing the infusions as before, but I'm not doing as well right now and am back on opioids due to recent spread of my CRPS thanks to surgery. But that combination (ketamine infusions, LDN, intranasal ketamine) worked really well for me for a long time, and I hope to get back to that same place again once we can (hopefully) get things stabilized a bit (which, among other things, involves temporarily altering my normal ketamine protocol to something a bit more intense).

As for the opioids & infusions, my doctor (and several other prominent CRPS/ketamine docs I know of) feels that the infusions do not work as well when patients are on opioids. I don't know that there is any scientific support for this at this point -- it is just what they have observed in clinical practice -- but somehow the opioids seem to interfere with the ketamine. So whenever possible, my doc tapers his patients off of opioids (or to the lowest dose possible, supplementing with intranasal or sublingual ketamine for breakthrough pain) prior to starting the infusions. Personally, I have had infusions both while on and off of opioids, and the infusions definitely don't work as well for me when I am on opioids (at least the pure mu agonists). Besides not getting as much relief/as long lasting relief, I normally sleep through most of my infusions because of the sedative effects of the ketamine and additional sedation given, but when on opioids, I am wide awake the entire time, even when we increase my ketamine dose and double my sedation! The difference between being on and off of opioids is actually quite impressive.

Yes, I would take your pain meds as normal before your infusion tomorrow/I would not recommend stopping your opioids now. As you mentioned, they are already built up in your system, so it likely would not make any difference other than sending you into withdrawals. This is something that would have had to been done ahead of time, with your doctor's guidance, and can take anywhere from several days to several months, depending on the medication and dose that you are on.

I am a bit concerned with the protocol that they are using for your infusions. It sounds much more similar to a depression protocol (which I also have experience with) than a pain protocol. Do you happen to know how much ketamine they will be giving you during your infusion? Ketamine used for chronic pain typically requires much higher doses than depression (although it is still considered "low dose") and is administered over a longer period of time (typically 4 hrs/d for 2-10 days at a time, if outpatient, depending on how far along you are in the protocol, or 24h/d for 3-5 days, if inpatient). Do you know if they will also be giving you supplemental medications to prevent side effects (typically midazolam or another benzo plus clonidine for sedation/to prevent dysphoria +/- ondansetron for nausea)? These supplemental meds are generally not needed at depression doses (except maybe ondansetron), but they are at the higher doses needed for chronic pain.

This is why I don't like ketamine clinics, and was specifically told by my original referring doctor not to go to one. They try to use a "one size fits all" approach, and don't seem to be nearly as experienced or knowledgeable about the pain protocols. I hope I'm wrong, but I'm quite suspicious that their protocol is going to be ineffective for you. All I can tell you is that the one hour, once a week, lower dose infusions that I recieved as part of a depression study did very little for my pain other than providing some mild to maybe moderate relief during the infusion, but the effects did not last once the infusion ended... The dose they used in the study for depression was 50 mg total (which I think is a pretty standard dose for depression). A typical outpatient dose for pain is 200 mg in total. However, I would be quite surprised if they give you that high a dose given that it will be over such a short period of time. 200 mg/h is a LOT all at once, particularly for someone who is ketamine naive. I get 100 mg/h at present (I recieve more ketamine in total than the average patient), and to say it knocks me on my butt is an understatement... Also, once you do reach a "maximum benefit," you will still have to continue with periodic booster infusions, as the relief you get is not indefinite (it does not permanently reset your NMDA receptors).

Anyways, I don't mean to be negative. I sincerely do hope your infusions go well and that you get relief from them. But if the ketamine doesn't work for you, I just want you to be aware that it may be more of a protocol problem than it is a "the ketamine just doesn work" problem. Please let us know how it goes. Make sure to take it easy for the rest of the day and at least the following day after your infusion. My doctor always says that the best thing that we can do as patients during and for the next couple days following our infusions, is to sleep, reduce all external stimulation, and allow our brains rest and the ketamine to do its work...

Skeye

Post Edited (skeye) : 12/12/2017 9:57:54 PM (GMT-7)

Melissa,

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!

Skeye

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)

I had my ketamine infusion on Wednesday and all went better than expected. I have to admit after all I read online I was very nervous going into it that I might have hallucinations or nightmares during the infusion, but the doctor gave me premedications to prevent any such thing and after about 10 minutes when the ketamine kicks in I really do not remember anything. As a matter of fact we were about 2 hours out of town when I woke up remember vaguely speaking to my husband and went right back to sleep until we got home. Once we got home I came into my tv room and crashed until about midnight and then went to bed and slept until 5a the next morning. Thursday I felt a little groggy until about 10a but after that I felt great. I wouldn’t say the ketamine has totally relieved my pain by any means, but I would say it has reduced it some. I am scheduled for another infusion on Monday, then unfortunately due to scheduling and the holiday I won’t be able to go again until January 3 and 10th. I was hoping to get 4 weeks in back to back, but hopefully these will be close enough to get a good result.