Hi Lisibug,
As Susie mentioned, I am the member who receives ketamine infusions (I believe I'm currently the only one here who does). I will answer as many of your questions as I can, but the success and side effects of the infusions vary greatly between individuals, as do the specific ketamine protocols, and basically you are not going to know whether or not it is going to work for you, or how much relief you are going to get until you try it...
I get my infusions for CRPS (complex regional pain syndrome, also known as RSD, or reflex sympathetic dystrophy), which is a neuroinflammatory disease that causes severe neuropathic pain in the affected body part(s), as well as an assortment of other localized and systemic symptoms. Treatment resistant CRPS is the most common indication for ketamine infusions (and is primarily what my doctor prescribes it for), although they are sometimes used for other types of pain. I can say though, that I also have moderate to severe neuropathic pain in both of my legs due to radiculopathy (actually just had surgery for it recently), and the infusions do very little for that pain. They do help temporarily, while the ketamine is being administered, but I really don't get any lasting relief from the infusions, like I do with the pain & other symptoms from my CRPS. Everyone is different, but based on my experiences, & what I've seen/heard from other ketamine patients, I would be a bit skeptical that ketamine is going to help you long term if radiculopathy is your only problem, unless perhaps you have lots of central sensitization that is contributing to your pain, as ketamine is very good at reversing that.
To answer the rest of your questions:
My CRPS started 11 yrs ago (the back stuff is more recent/new within the last year) & I've been receiving ketamine infusions for two years now. By the way your questions are worded (with asking about
first & second infusions), it seems to me that you are under the impression that the infusions are almost like a "cure" for your pain, in that this is a temporary or short term process, and that one or two rounds of infusions will fix all/provide very long lasting relief... That is generally not the case. In the vast majority of cases, the infusions are a long term treatment, not a fix. And unless things change (either with our conditions or the further advancement of medical science), most of us (me included) are looking at having to continue these infusions every few months for the rest of our lives...
As far as the infusions go, my doctor uses an outpatient protocol that begins with 10 consecutive days of infusions (minus weekends) for 4h/day, increasing in dose every few days. This is then followed by 2 consecutive days of boosters after two weeks, followed by every month for a few months, & then ultimately 2 consecutive days of boosters as needed from there on out (most people need boosters every 2-3 mo, although some people get relief that lasts shorter or longer, and some people may also need more days of booster infusions, a higher dose, and/or adjunct medications, depending on individual response). However, this is just an example of one protocol (though I think it is a fairly typical outpatient protocol, at least for CRPS). Different doctors use different protocols, and infusions may be either inpatient or outpatient. My doctor also prefers that his patients not be on opioids, if possible, when receiving ketamine infusions, as he feels that the infusions do not work as well when patients are on opioids, and I personally can attest that this is true, as I have had infusions both while on & off of opioids, and they most definitely do not work as well for me when I am on opioids...
Personally, I have never experienced any long term side effects from my infusions, though we do monitor my organ function via routine blood work at least once a year. However, there have been reports of bladder problems with long term ketamine use (however, that is most commonly seen in people who abuse ketamine, rather than people who are treated with ketamine for medicinal reasons). I do experience some significant side effects during the infusions and find them to be physically challenging, but they are temporary. The longest lasting side effects that I experience are fatigue and vertigo, which last for several days following the infusions, but nothing more than that. Side effects also seem to be a very individual thing, as I know people who have not been able to tolerate even the lowest doses of ketamine, while I also know people on much higher doses than me who experience no side effects whatsoever (not even sedation). Side effects are also likely to vary depending on dose (the higher the dose, the more likely the side effects) and the specific protocol your doc uses, including whether or not he/she uses adjunct medication to prevent/limit side effects, which good docs will do.
As Susie mentioned, my insurance does typically cover at least some of the cost of most of my infusions (usually enough that my doc writes off the rest of the charges), but it varies. It seems that some insurances cover infusions, and some don't. And some insurances cover them some days, and not others (don't ask, it makes no sense, and I've found that it is best not to question it).
I don't know where you are planning on getting your infusions (ie. whether your doctor is going to administer them, either in office or in the hospital, or whether you're are being referred to a "ketamine clinic" -- a clinic that only does ketamine infusions), but I would be cautious about
going to a ketamine clinic, as 1) they tend to have a "one size fits all" approach to treating patients, and are not willing to adjust doses and protocols to meet specific patient needs, 2) I worry that their selection processes are not stringent enough since they are running a business off of administering ketamine only, & won't make money unless they have patients, & thus may encourage inappropriate candidates to get infusions (not everyone is a good candidate for ketamine, and regardless of condition, extensive testing should be done beforehand, as it is not a benign drug), 3) they are less likely to use adjunct meds to prevent (otherwise distressing) side effects, and 4) many (if not all) of them do not accept/bill insurance, regardless of whether or not your insurance would pay something if billed. Many docs do not offer infusion services in office, as it requires specialized equipment and a dedicated nursing staff, but it is starting to become more common. So if you doc has to send you elsewhere for your infusions, I would recommend asking for a referral to another doctor who does outpatient ketamine infusions as a part (but not all) of his/her pain management practice.
This is something else that you didn't ask, but I feel is important to tell you -- while ketamine is undoubtably the most important treatment for me, I still do have to take certain oral meds (though usually no opioids) to control my pain on a daily basis, and this is typical of every ketamine patient I know. Plus we've also had to add additional IV medications to my infusions over time to add to or supplement the effects of the ketamine. So, in other words, while a great medication, ketamine alone is often not a magic fix, but rather just one modality to be used in conjunction with others (which is why my doc requires a psych eval before starting ketamine -- among other things, he wants to know that his patients have realistic expectations about
the treatments beforehand). And as I've alluded to, what is most important is finding a good, knowledgeable, and
open-minded doctor, if you have any hope of success with these treatments.
Anyways, hope this is helpful. Best of luck! I hope you find some relief from the infusions. Please let me know if I can be of help in any other way.
Skeye
Post Edited (skeye) : 12/12/2017 4:11:41 PM (GMT-7)