Kratom

[Memmy]

I have had great relief using kratom. As soon as I feel my leg or legs starting their awful feelings I take a teaspoonful in juice. It's not as vile as I had thought and anyway whatever it tastes like I don't care, it does the trick. Within about 5 Min the feeling goes away. Heaven. I can actually go out for a meal and have a couple of glasses of wine without spending all night walking around the bedroom. I still take 0.09mg mirapexin. Just praying it keeps working. Hope this message helps

[LotteM]

Kratom gives me relief too. I find it works fast, especially on an empty stomach. And whereas the oxycontin I took previously worked equally well for my RLS (although not as fast), it had quite a few negative side effects. Kratom does not have those for me, "less hard on the body" as someone else here on HU said. And I need only half a teaspoon to suppress the RLS. The only negative is that is doesn't last too long, 4-6 hours. Although my three evening doses (early-mid-late evening) almost always let me sleep through the night.

I do rotate strains (2 red ones) on a weekly basis, and I have a third strain (white) for daytime use.

[Memmy in reply to LotteM]

You seem to have a stronger rls than me. I feel for you. I take one level teaspoon only when I feel it coming on, usually when I go to bed. If I'm lucky I sleep through the night. I never have leg problems in the morning only in the evening. Kratom has been a miracle worker and it's legal here. Thank God for this site.

[Sumoucat]

I've been taking Kratom for a couple of years now, and, like you, I'm so thankful it helps. It's a good idea to take a Kratom break every now and then, otherwise it's likely to become less effective. I take three days off a month. I suspect this is more often than I need to, but I'm terrified it won't continue to work. I also take pregabalin, and with this combination I usually get up and walk around only once a night. (Bonus: getting up instead of sleeping through the night helps the arthritis in my back be less intense.)

[Operabab]

Hi

I'm in the uk and not sure its legal here but have thought about trying Kratom can you tell me where I can obtain it and what is the best type to use. When i read about it it says it can induce alertness and insomnia?

Although i only suffer in the evenings I never sleep for more than about 5 hours often less have augmenting on ropinerole bad effects with pregabalin and currently taking clonazepam 2 nights on 2 nights off to avoid addiction, but not great so looking for alternatives.

Thanks

[Memmy in reply to Operabab]

Hi, I live in Greece but in the UK you can buy it online from Holland. Kraatje.eu. The red vein makes me relax and I have noproblem sleeping. Some strains make you more alert. Good luck

[dklohrey in reply to Operabab]

Here in U.S. on WebMD they describe as "Using kratom can also be unsafe. Kratom use has been linked to serious side effects including hallucinations, seizures, liver damage, withdrawal, and death. Due to these and other serious safety concerns, the U.S. Food and Drug Administration (FDA) continues to warn people to avoid using products containing kratom or its ingredients".

[Dougg in reply to dklohrey]

It sounds like WebMD is simply parroting the FDA's position. However, I strongly encourage you to look beyond WebMD and the FDA for factual information about kratom. The FDA's position has been countered strongly by scientists. For more information about that and the science behind kratom, see americankratom.org/advocacy....

Among other things, the so-called "deaths" that the FDA attributes to kratom have been shown - again, by scientists - to be attributable to chemicals added to kratom, not pure kratom itself. In this letter to Congress (see americankratom.org/images/f..., nine leaders in the field - all Ph.D.'s, three of whom are from Johns Hopkins - point out the flaws in the FDA's argument and position, explaining how the FDA has not followed the science in this area. They conclude (on page 3), that "Accordingly, there are no safety data to support the conclusion that kratom poses an imminent public health risk to consumers that would justify its scheduling."

Personally, kratom has been a godsend to me in dealing with my RLS and helping me to get off 25 mg a day of oxycodone. While the oxy worked, I found kratom to be gentler on my body and generally more effective.

Respectfully,

Doug

[involuntarydancer in reply to Dougg]

I thoroughly concur with this well reasoned response. Moreover, even taking the FDA figures at their highest, the incidence of deaths attributable to kratom are miniscule by comparison with medically prescribed drugs such as oxycontin. However, I do wish that kratom was controlled in the way that prescription drugs are so that the small risk that there is with it (from contaminations) could be eliminated.

I have found that kratom is appreciably more effective for my legs than oxycontin or codeine. Is MUCH easier to discontinue than opioids or pregabalin so that it is easy to take breaks from and has fewer side effects. Although it can cause a degree of nocturnal alerting it is nothing like so severe as with opioids and the daytime drowsiness and lethargy that makes life on opioids so difficult is almost non-existent with kratom. I also suspect that it is better for my opioid induced central sleep apnoea.

I also find that if I take kratom during the day, I need less to cover symptoms at night so, although it only acts for a short time, the effect does seem to be cumulative. It has been a godsend for me

[Dougg in reply to involuntarydancer]

Thanks. Some good news on that front is that the American Kratom Association has started a Good Manufacturing Practices Standards program to help enhance the safety of kratom products. A number of vendors have stepped up to the plate and now comply with that. My own vendor submits all of their products to third-party testing for salmonella, pesticides and other such things, and then publishes the results on their web site. More information about the AKA's GMP Standards program, including a list of qualified vendors, is available at americankratom.org/vendor/g....

[smilingjane in reply to Dougg]

Hi Doug if you dont mind me asking, have you totally stopped Oxy and if so did you do it gradually. I take 30 mls split over 24 hours as I have RL 24/7.

I have been on it for two years and have found that over the last 6 months my appetite has completely gone. Do you think that is down to Oxycodone? And if so how come my apitite was normal for the first 18 months of taking it?

I am confused 🤔

[Dougg in reply to smilingjane]

Hi SmilingJane. I'm sorry about your appetite. I haven't had oxy or kratom affect my appetite at all, so I'm afraid I can't help you on that. It does seem odd that you would have been fine for 18 months, and then suddenly have that as a side effect. On the other hand, almost any kind of substance - and perhaps particularly pharmaceuticals - affects different people different ways. In a quick review on the web, I do see that loss of appetite is apparently a known side effect of oxycodone (e.g., mayoclinic.org/drugs-supple.... Perhaps whatever mechanism causes the loss of appetite took a long time to establish itself in you.

In response to your first question, I was taking 25 mg of oxy (five 5-milligram tablets) spread across the day, and was headed toward 30 because 25 wasn't quite enough. Like you, my RLS is also 24/7. I learned about the use of kratom for RLS on this site. I took my first kratom dose in an afternoon and it worked so well that I decided to gamble by taking some more at bedtime and leaving off my oxycodone entirely. (At that time, I was a little nervous about mixing them.) The kratom took care of my RLS quite handily, and I slept better than I had in a long time. After that, I just kept taking kratom and didn't feel any need for the oxy, nor did I experience any withdrawal effects. So I essentially dropped it all at once. That was about two and a half years ago. That said, everyone is different, and if you decide to go off oxy in favor of kratom (or anything else), I would suggest doing it slowly and listening very carefully to how your body is reacting. Others on this forum may also have experience coming off of oxycodone and may be able to add helpful insights.

After a couple of years, I have had some evenings where kratom - for reasons I don't understand - doesn't do its job, so I introduced a small amount of oxycodone back into my regime mix. A number of experienced RLS sufferers on this forum have suggested that the best approach is to have multiple ways to deal with the RLS and then rotate them periodically.

I hope this helps. Good luck!

[smilingjane in reply to Dougg]

Hi Doug

Thanks for all of this and going to the trouble to answer.

Congratulation re swooping the oxycodone for Kratom successfully.

Maybe the apetite thing did take a while to appear, difficult to tell. There might none something else going on.

Your think right about abot mixing Oxy and K. I once replaced an O dose too early after a K . dose and felt a bit of nausea for a few hours So no , definately space out I have sometimes tried to replace O with K but never seems to act quite as efficiently.

I think I will try again with lower dose of K and see what happens.

I havent had a proper meal for months, just things like plant based yoghurts and rice pudding. I miss enjoying good and you feel a bit of an odd ball with others 😏

Thanks again. Do you get you Kratom from the Krajji place in Amsterdam?

[Dougg in reply to smilingjane]

You’re welcome. I am in the United States, so ordered from a US vendor.

[smilingjane in reply to Dougg]

Ah .... is it legal there in all states?

[Dougg in reply to smilingjane]

It’s legal in most states. The Internet has various sites that track state by state legality. A quick count from one site suggests that kratom is legal in about 43 out of 50 states.

[smilingjane in reply to Dougg]

Ah that's interesting.

Let's hope that continues 😊

[TheDoDahMan in reply to Dougg]

As regards a gradual lessening of the effectiveness of Kratom over a long period of time, the same thing happened with me. Before I was able to find a prescriber for low-dose methadone, (5 mg x twice daily), I found relief with Kratom, but I started with a single 2 gram dose daily and, gradually (over two years) had to increase to four daily doses of eight grams each. I was never bothered by ANY untoward side effects, but knew that the increase in tolerance meant that I had to find another palliative. It has been two years since I started the methadone regimen, I have not felt any tolerance buildup, and my life has been restored to me.

[Dougg in reply to TheDoDahMan]

It's great that methadone is working well for you, and may it continue to do so. And it's fantastic that you were able to find an understanding provider. Interestingly, I haven't had to increase my kratom dosage over the years, although I have tried reducing it and eventually end up hitting a wall where it's clear that I need to go back to where I was. Brain chemistry is so complicated, and it does seem like everyone's experience is a bit different, which leaves us all trying to find our own best paths; one of the reasons I'm so grateful for this forum - to be able to learn from other's experience. Thanks for sharing yours. Be safe and well.

[TheDoDahMan in reply to Dougg]

Hi, Dougg,

The reason I responded as I did, was in reference to the following sentence you wrote previously in this thread: "After a couple of years, I have had some evenings where kratom - for reasons I don't understand - doesn't do its job, so I introduced a small amount of oxycodone back into my regime mix."

I guess my point was that even though tolerance to kratom eventually prevented me from continuing kratom's use, the same thing has not happened with my use of low-dose methadone. I even spoke with another patient in Dr. B's waiting room who said that he was still on the same dose (of methadone) for ten years and had never needed to increase his dose.

Your response to me was so kind and well-crafted. I agree with you that this forum evokes gratitude in all of us who have suffered and found help from wonderful people sharing their experiences.

[Dougg in reply to TheDoDahMan]

Thanks. I'm glad that methadone has worked so consistently for you. And wow, with regard to the patient in Dr. B's waiting room! Ten years on the same dose without an increase. That's very impressive and promising. If my current regime starts failing me, it's nice to know that there's an alternative out there with a track record like that.

Be safe and well. 🙏

[Shumbah in reply to smilingjane]

Hi Jane , you are not taking metformin by any chance as that causes appetite loss

[smilingjane in reply to Shumbah]

Hi Shumbah hope your getting on okay 🙏

No nothing new in the pill diet. I am thinking that maybe the Oxy is causing it. Not sure why it took over a year though 🤔

I am keen to get an up to date document verifying the benefits of the buprofenimine you take, (forget the name if the pill) and do you have a link fir any double blind study that has been done Shumbah?

I have print offs but all in a mess and really looking for something that has been published or established in the last year to take along to my GP.

Am thinking of requesting g a change over to switch from Oxy to the ones you take.

I'd be very greatfull if you can help.

Many thanks

Jane 😊

[LotteM in reply to smilingjane]

Hi Jane, so far, there hasn't bern a double-blind placebo-controlled study on the effectiveness of buprenorphine for RLS. There has only been a small, open label study. Moreover, there have been experiences from patients, probably collected by the dra prescribing it. Dr Buchfuhrer said in an email to puzzler1 than this fall an update of the Mayo Clinic Proceedings paper on the use of opioids for RLS will include a review and recommendation for buprenorphine. Buprenorphine is not a new medicine, thus there are quite a few experiences with it. I found a review on its mode of action, use and safety (Khanna & Pillarisetti 2015) semanticscholar.org/paper/B....

[smilingjane in reply to LotteM]

Hi LotteM

Thank you for this information and for going to the trouble of posting. Everyone on this site is so kind.

Jane 🙏

[LotteM in reply to smilingjane]

Hm. The link seems incomplete. Could you access the paper? If not, you could use the names of the authors, the year and the subject.

[smilingjane in reply to LotteM]

Yes I opened the pdf no problem 😉

[dklohrey in reply to Operabab]

I am currently weaning myself of ropinirole, as I began having augmentation. I have read favorable reviews of gabapentin, so plan to switch over to that. I have had rls for about 25 years, about the same amount of time that I have been on a beta blocker for my heart. I recently read where beta blockers can be a trigger for rls. Am anxious to see what happens as I rid myself of ropinirole (requip). Amazing how many things can trigger rls.

[involuntarydancer in reply to dklohrey]

Good luck with the withdrawal. It can be very hard because symptoms get a lot worse as you reduce the ropinerole, especially towards the end. Many people find they need a temporary opioid - or Kratom - at that stage. Once the drug is cleared out of the body many people find their symptoms are a lot better than when they were on ropinerole. I hope gabapentin works for you. There a lots of people taking it on here.

It’s worth looking at your serum ferritin also. Ask your GP for a test if you don’t know the number and is it’s below 100, start an iron supplement.

[involuntarydancer]

Thanks for the update Memmy. I was wondering how things were with you.

[jimmcar]

I'm so glad that kratom is working for you. I liked it so much and it's effect was so beneficial for me that I started growing my own trees. I live in Costa Rica so unfortunately that's not a viable option for you Brits.

They are about 3 years old now and I get to take leaves from my own trees.

Fantastic!