We tried using pure ketamine cream .5% on mom’s EM condition. The tests lasted only a week and although the prescription said we could put the cream on up to three times a day we didn’t put it on nearly that much and also we skipped two of the seven days in the weeks worth of testing.
The first day we had two applications of the cream on her feet, and also brushed it on the nerves on her ankles on both sides that go to the feet. Three of the other days we only put ketamine cream on her feet once during the day, in the late afternoon or evening. And once we put two applications on. In all only five days out of seven were used as days when she had ketamine cream on her feet. Two of the seven days she had no cream, but she had her “pain patch applied”. The reason I didn’t put the cream on her feet was I was actually afraid the ketamine cream with the first days patch dose of fentynl might be to much for her . . . so it was a five out of seven day test.
This made the tests a little bit uneven in the recording of symptoms. The main reason for the differences in dosages was the apparent side effects which made her even more tired and sleeping even more in response to the pain medication she was taking. I did not want to push the cream on her to much especially when she was reacting more to her pain patch and opiod doses of Norco 10/325 which she was taking in “half doses” every 4 hours. The pain patch was a 50mg fentynl patch and I did not put Ketamine on her feet the “day of the new patch” application. She has been quite drowsy.
You can’t really measure the effectiveness of a pain cream if the patient is just sleeping more. I could say she was sleeping more, but that’s not a very good measurement. So it leaves me with an unsatisfactory report. Maybe if we reduced the other pills more and tried the cream again, we’d have a better result. . . but with her other side effects, I’m not sure we would even try to do that in the future.
Here’s really quick summary.
The first day she had good results and some relief of symptoms. We didn’t have amytriptaline in this dose of ketamine cream because I felt that the tricyclic antidepressant might be causing other bad symptoms and side effects she experienced in test one which was a few months back.
The Ketamine seemed to reduce pain, but she was still very sleepy. Her pain seemed to be reduced and also her feet did not flare to a temperature that was as high as they would get. There were still hot spots on parts of her feet but they were lower in temperature than they were without the cream. This seemed to be a postivie effect. And I measured decreased temperatures more than one day from the ketamine test.
She was sleeping more and likely this was because the ketamine was causing an additive effect with the pain killers so they may have been more effective and hit her harder than without the ketamine. This of course caused some concern as there has been a bit of a scare in the medical community in the US about opiods being over-used and some pressure to discourage those.
- FOR MOM the pure cream had less side effects.
Mom didn’t seem to have any bad mental side effects from the pure ketamine cream and didn’t seem to be as restless with any reactions to music as she did when we used the mixed cream. No mood side effects.
She wasn’t as active however as she was with the first tests that had two components in the ketamine cream mixture. She was doing a little more some days, but she didn’t seem to want to break out and go out and walk more or showed any big recovery.
Maybe less pain part of the time. But it wasn’t as consistent as it seemed to be in the first test. There were other variations of medication as well, so this may have been less than a perfect test. But one thing did trouble us with this second test and she mentioned it. She seemed to be weaker and had more problems moving and I think this was a reaction to the ketaimine in her system, or perhaps due to the additive effects of it with the other medications she was taking.
She was having more problem walking and this was enough of a concern to stop the test of the cream.
Ketamine showed some promise but over all the side effect in both tests we did were to much for her.
This is a quick summary of the tests. I can say that I took a little bit less measurements than I had hoped to take, but many of these were not taken because frankly she was sleeping a lot more when this was added to her pill mix. I think the Ketamine cream may have made her more responsive to the pills as well and that could be a temporary lasting effect for a few weeks, if this was like the previous test seemed to be. It may be doing a kind of reset for opiod effectiveness in her case. I probably can’t speculate much on that and if that is good or bad and I’m going to not make a big deal about that, but keep an eye on her and how she reacts to the pills and pill dosages. She was showing some extra sleeping and napping during the day, and this is often because she doesn’t get enough sleep at night.
It’s tough because in her case she is almost on a razor’s edge of the pain pills being not effective, but then when they are she falls asleep more. Which can be alarming to the doctors at times and may cause them to cut back on her pain pills resulting in worse flares. This can be a case with chronic pain and opiod use, a tolerance can happen. In the case of ketamine, it may be resetting her system to respond to the pills and require fewer doses. What happens in her case, is she may nap more and miss a dose and it becomes a “self regulation” or cut back on pain meds when more sleep is happening. This is in part also becuase she takes half doses, so if she falls asleep a bit longer, she may delay a half dose.
We continue to make small adjustments in approaches to her care. More recently in the past few months, since the first ketamine tests she has done more cold water immersion and used pressure socks. The pressure socks and wet socks have helped her some. But her overall function and mobility have not improved much. We get very little returns in mobility in her case with most small dose adjustment’s of lifestyle changes in how to treat her case.
Ketamine definately has helped some and when it seems to work, it seems to do some wonderful things. On the other hand, in our case the side effects from the tests have basically stopped our ability to use this and try this further.
Mom’s case of course could be far different than the case of others, as many EM patients could be developing the disease from some other stange mix of primary or neurological damage to their body.
I think ketamine cream is worth a try for those who have not found other treatments to work, but it depends on the patient and what else has been tried. She also complained about “other pains” in the toes of her feet and pain in her feet during one day of the test. The other pains in her feet I think was from over chilling while sleeping and when her feet were removed from the cold water immersion bath, after she woke up the pain went away. The “pains” in her toes that was some other kind of pain, may have been a bad side effect or a sign of a change in symptoms and not necessarily a bad side effect, but to her it was not pleasent. Some cold areas of her toes looked white like Raynaud’s chilling. At times her feet would look good and were not swollen, but this can happen from normal chilling and elevation and pressure socks, so that’s not necessarily something I’d attribute to the ketamine cream.
The inabilty to walk as well and feeling more shaky from the ketamine was the real deal killer for the test. It’s not likely that we’ll be doing another test of Ketamine for some time, if ever.
With my mom it seems she can “over-react” with bad side effects to some pills, which of ocurse is kind of strange once you develope a tolerance to pain medication and have been taking it for such a long time. She does have hypersensitivy in her system and feet. She is not numb, but more sensitive. Perhaps this extra sensitivity extends to side effects of medications that might help her in some way. . . but that’s just my guess from what I’ve seen. It’s difficult to measure. As always we take the side of stopping drugs if there seems to be bad side effects. We tend to err on the side of taking less to avoid bad side effects, rather than take more.