Ketamine infusion

[watercolours]

Hi, I'm wondering had anyone had a Ketamine Infusion for chronic pain? And if so, did it affect you in any way and did you get relief from it? I'm due one tmrw. Pain doc previously told me that it "messes with your head". I've had lignocaine infusions, the highest dose only lasted a week and a half unfortunately, so rhumy wants to try ketamine.

[SheffieldJane]

Gosh! How unusual. I wouldn’t touch it. I believe it is highly addictive. Correct treatment with Pred ought to alleviate most of the pain and stiffness.

[watercolours in reply to SheffieldJane]

Really? Even as an infusion? I've never been able to get my pain under control, I also have Fibro and osteoarthritis. No matter what dose, I've never been pain free. Doc has tried me on everything he can think of, including the Lignocain, and he feels because that worked for even 1.5 weeks, his hope Ketamine will work better!

[SheffieldJane in reply to watercolours]

Sorry, I know very little about the treatment of your co-morbidities. I thought you were enquiring about its efficacy for PMR/ GCA. I didn’t mean to cause distress to a person in pain.

[watercolours in reply to SheffieldJane]

No, not at all, I know, it is an unusual one! I'm very nervous about it I have to say, but the relief I felt when the Lignocaine worked was incredible, so I'm trying to push the nerces aside in the hope it works, but the "messes with your head" is what worries me! I think it's only short term, the reason for the overnight stay!

[Johnnox in reply to SheffieldJane]

No personal experience with its administration however I had a client who experienced great relief while attending a hospital pain clinic but he was denied ongoing Ketamine dosages after spending about 2 weeks at the clinic. He didn't mention any side effects but one wonders whether it "plays with your head" more than severe and chronic pain. Got to be worth a try depending on one's risk profile!? I recall that he pursued every available path to continue with K without luck.

[Singr in reply to SheffieldJane]

Pred is highly addictive too. Which is why it’s taken me so long to get down to 6mg. The withdrawal has been horrendous.

[SnazzyD]

Hello, but what’s your pain due to? What’s been happening between your last post and especially regards PMR and Pred? Why is the Rheumy suggesting something the pain doc hasn’t? Ketamine is not to be trifled with it seems so is there clear reason for going down this line? See this

healthline.com/health/ketam...

[watercolours in reply to SnazzyD]

I have PMR, Fibromylgia and osteoarthritis. My rhumy has tried lots of different doses of pred and different medications and biologicals, but nothing deals with the pain. My rhumy referred me to the pain doc, who did the Lignocaine infusions, the last one being on the highest dose, and that worked for a week and a half, so rhumy feels the Ketamine should work. I have to say I'm very nervous about it, you're kept in overnight as "it messes with your head"!

[SnazzyD in reply to watercolours]

Yes, the link explains that afterwards you can feel anxious and agitated afterwards.

May I ask if they think your pain is not due to PMR and if not, why?

[watercolours in reply to SnazzyD]

He just knows I'm in so much pain all the time. I've increased and decreased and I feel the 6.5mgs that I'm on now, is keeping the PMR damped down, the "rest" of the pain is always there, painkillers might damp it down ,but never takes it away completely! So my rhumy feels as Lignocaine did work for the short time, it's worth trying Ketamine.

[SnazzyD in reply to watercolours]

Just to be sure of the level of influence of PMR, have you tried a week on a higher dose of Pred like10 or 12mg?

Sometimes I think the picture becomes very confused and cause and effect become separated. I spent my 20’s and 30’s with raging Fibro and found that other causes of pain got mixed up or aggravated the pain that jumped around and set up shop in different places or was a general cloud. Eventually two silent physical causes became known when they went ballistic and were dealt with and in my case therapy had the biggest effect of all.

What is your pain like, is it in the same spot and where does it go? Presumably they’ve done scans and the like? I know sometimes it’s difficult to know what to scan, if anything.

[piglette]

Are you being given Ketamin for PMR pain? If so it won’t work. If it is for something else that is different. Are you taking steroids?

[watercolours in reply to piglette]

I'm being given it "for pain"🤷‍♀️ Yes I'm on steroids, on 6.5mg for the longest time and any time I try to reduce the deep gnawing pain in thighs, shoulders, buttocks, arms, starts up again. I was initially diagnosed in April 2016, then GCA in August 2016, and have never been able to get off them since😢

[piglette in reply to watercolours]

Are the steroids helping? Ketamin is normally used as an anaesthetic and can be hallucinogenic. It sounds like they are using the Ketamin as a last resort as they don’t know what they are treating at the moment. Good luck tomorrow.

[watercolours in reply to piglette]

Yes the steroids are helping in so far as when I reduce it all comes back. It's being done in a very controlled environment, with the same doctor that did the Lignocaine infusion. Thanks very much. I'll come back in a week or so and let you all know how it's working!

[piglette in reply to watercolours]

Thanks I would be interested to know how it goes.

[PMRpro Ambassador in reply to watercolours]

In which case - WHY are they insisting on reducing the pred. When I read the description "deep gnawing pain" and the sites, sounds very inflammatory and bursitis-ish. If that is the case - it will be interesting to see if the ketamine approach works.

[PMRpro Ambassador]

painspecialtygroup.com/blog...

and the heavy duty stuff is here:

journals.lww.com/anesthesia...

I suppose the hope is that it breaks the cycle of pain - so your body starts to forget the pain it expects.

[watercolours in reply to PMRpro]

Thanks so much PMRpro, I hadn't read these and honestly they're very informative and makes me feel more at ease! I'll keep you posted.

[Omanain in reply to watercolours]

Good luck. I think in your case it must be worth a try.💕

[Merryfield]

Ketamine is nothing to mess around with. Proceed with caution. I have only heard of micro-dosing it under supervision for intransigent psychological problems.

[watercolours in reply to Merryfield]

Thanks for the info, but it is being done under a very controlled environment with a Chronic Pain Consultant, who's done previous Lignocain infusions, so I do trust him. PMRpro has sent some valuable info for Ketamine use with Chronic Pain, so I'm just hoping it'll work🙏

[powerwalk]

Thats rough, trying to make that decision. I get it, im in constant pain from fibro, and back and you really would do anything for some relief!! I know how you feel, im very bad with meds. Do let us know how you get on or if you go ahead with it. Best of luck if you do.

[watercolours in reply to powerwalk]

Thanks so much! So sorry you're in so much pain, its so hard to deal with. I'll def let you know how it goes.

[Booklist]

I had ketamine when I dislocated my ankle. I hallucinated and thought I had died and was on my way to heaven. Then I woke up to find my ankle had been sorted. I didn't have any after effects.

[Myfoe]

indeed I have several times but it was for chronic back pain prior to having PMR we actually found out it worked from surgery to remove my gallbladder after my surgery my pain and myoclonus was much better for a few months I asked the anesthesiologist what he used he said ketamine I have 3 infusions mon-Wed-fri they take 3 hrs I started feeling relief within a couple days I had no I’ll feelings afterwards at all I always went to the office afterwards I actually haven’t had any since the whole Covid mess

[darkred in reply to Myfoe]

Thank you for this positive information, as we try to learn everything we can about what may work for pain.

[Pixix]

no thanks! Once in hospital was enough for me, but morphine causes hallucinations for me, think I’m susceptible…may be fine for you. I’ve battled chronic & acute pain for 15 years & tried most things. I have Polymyalgia , Fibromyalgia, Trochanteric bursitis, Hypermobility, Raynauds Syndrome! Osteo Arthritis, Sciatica, Essential Tremor, Haemangioma (spinal), Orthostatic hypotension, Dry Macular Degeneration, Plantar Fasciitis. I’m tribally buprenorphine patches at the moment & it’s the best relief I’ve had. Even had some pain free nights & more than 3 hrs per night. It doesn’t touch the pain of frequent joint subluxations & dislocations & its not dealing with the bursitis very well…but I think it’s dulled the toothache I’m currently battling with…some of the pain of the infection is there, but not awful toothache which I normally get in that tooth. Personally, my body is hooked on Tranadol after 15 years, & I dread coming off it (not that it’s been suggested I should stop!) I’m very interested, though, can you post later & say if it worked, please?

[Lenore58]

Hav not heard of K being used in this way; only for psychological issues. I’ll be interested to hear your update after trying it. Is LDN an option in Ireland? I’d be keen to try that with all you have going on and nothing working. Lots of success and few side effects.

[sidra1968]

No, but I would like to here how it goes. Thank you and good luck, hopefully it'll help a lot.

[DAB-T]

Might be worth a try

-as a last resort

-in a controlled environment

-in subanaesthetic doses by a clinician used to administering the drug intravenously

-with post infusion monitoring for psychological sequelae

Good luck.

[Bramble2000]

Apparently only 30/40% of people get good results and that’s usually if the pain is neuropathic in nature. Good luck.

[benhemp]

I'd recommend kratom for the osteoarthritis pain, but I see you are in Ireland where it is illegal. Bummer . . .

[Karenjaninaz]

I am a retired certified registered nurse anesthetist and administered Ketamine as an anesthetic for 37 years. I wouldn’t take it. I was given a very small dose for eye surgery and the next day I felt bizarre. It is usually given with a benzodiazepine (addictive) to avoid nightmares/ hallucinations which is a negative effect. We often only used it in patients in shock because it raised the BP and sped the pulse. It is still used as injection, to calm a scared child, before placing the anesthetic mask.

PMR pain is best relieved with steroids. Anesthetics are not anti inflammatory.

[PMRpro Ambassador in reply to Karenjaninaz]

Yes - but this use of ketamine is at sub-anaesthetic doses,

[Karenjaninaz in reply to PMRpro]

I know that and have done that but it is short l acting. Anesthetic dose: one dose of 1mgm/Kg lasts about 20 mg.

I received the Ketamine analgesic dose for my cataract operation and the next day I felt a bizarre, unusual anxiety.

Now, I add, I am out of the loop and retired. Practices and techniques change.

[Karenjaninaz in reply to PMRpro]

True. I had a bad reaction the next day with feeling weird. The sub anesthetic doses were mixed with a little midazolam.

[Kberly]

Hi SheffieldJane I have had several IV infusions with Ketamine so I feel confident i can speak to this issue. I did quite a bit of research and was also encouraged by my GP and my Neurologist that it was safe and might help in my situation. It was administered by a Nurse Anesthetist who does this for chronic pain and mental health patients. I have had PMR for 3+ years (currently 5mg/daily pred), additionally have significant migratory pain (like fibro) all over my body since having Covid. I tried EVERYTHING to deal with the terrible pain. Finally, I learned about Ketamine and had IV Ketamine infusions 3 different times last year, each 6 weeks apart. The first set were 3 days of 4 hours straight under high dose Ketamine, the second and third time were just 1 day of 4 hours straight. Yes, it was like I was on a mind bending dream, but still cognizant of my surroundings (totally weird, and yes messed with my head, but also not terrible for me, totally like the movie Inception-- where the writer MUST have gotten the idea). The good thing about Ketamine is IT IS NOT ADDICTIVE. Read the research--it's not addictive. HOWEVER, it does raise your ALT (liver enzymes) as it is toxic for the liver. The good news is that it is metabolized quickly. The toxicity for me only lasted a couple of weeks and my ALT was back to normal. IT GAVE ME SIGNIFICANT RELIEF from my intense pain (but not the PMR pain in my shoulders and hips). So I am so grateful for that benefit. Now, however, I have discovered that this fibro all over intense pain is directly 1-1 related to eating animal protein. So I'm now handling it differently with a Vegan diet (not my fav). Have recently discovered I have high toxicity of 3 different MOLDS, so from reading I may be able to get to the bottom and get free from this pain (perhaps the PMR too! as I'm only 54, fit and healthy and should not have this disease so young). My best to you! Try it and see how you do. Please feel free to contact me privately if you want more info.

[christi48]

I would do a lot of research about this before going ahead with it...