RLS and methadone tolerance

[tinabuglaw]

My doctor prescribed me 5mg methadone. It worked perfectly for 6 months. No side effects, no high, no RLS!

Then, RLS started coming back. My doctor said I was on half the dose most of his patients were on so he authorized me to take 7.5 to 10mg. I'm currently on 10mg.

I am really scared that I'm going to keep going up on my side, even though studies allegedly show that people treated with opioids for RLS generally don't build a tolerance.

If anyone is familiar with this, I'd be grateful to hear about your experience with opioids and tolerance or dose adjustments.

[Hidden]

I build a tolerance with opioids, I think knowing a little of the body and its continued strive for homeostasis I would be very surprised if a body didn't develop tolerance to any/all of the opioids, albeit some at a slower pace than others.

Just keep increasing them, what's the problem, side-effects? Gimme the drugs for them, you can do that with non opioid drugs!!!

Of course there are drug holidays and moving to other drugs so there are avenues open to help make the arsenal of RLS drugs go a little further.

[sweetiepye in reply to Hidden]

I'm glad for your input, you seem to have a less fearful attitude concerning opiates than most people. I started Methadone at 5 MG for RLS while withdrawing from Ropinirole . It has been increased to 7.5 MG and I have started having side effects. My body jerks and contorts with tremors. I have gone back to the 5 MG dose until I see my Doctor. The side effects have abated . I imagine I will be put on another drug possibly Morphine. Any thoughts on this. I don't know anyone else to ask besides my Doctor and I like having more information from the patient perspective. Thanks. Pam

[Hidden in reply to sweetiepye]

Take what you can take! Don't be afraid of opioids or any other drug, just research carefully and have someone that knows you well keep an eye on you.

I always find the drugs loose efficacy no matter what they are and I have to stop. If its an opioid I stop it, its no longer sorting out my pain/RLS so must be replaced by a different more effective drug.

We need to stop making this drug look like it will eat all our children if used effectively! Not all people are setting out to become addicts and a little monitoring can prevent any problems.

[sweetiepye in reply to Hidden]

Thank you for the information . I am slowly being educated in the use of opioids.

[tinabuglaw in reply to Hidden]

I'm still following. And I know I can get more if need be, but I also know it's very rare for an RLS patient to develop a tolerance to opioids. I've taken Lamictal for 15 years and it still works at the same dose.

I was just afraid that if I had to double my dose in 6 months, how quickly will I need a deadly dose to relieve my symptoms.

And I'm at the end of the road. Sure there are other opioids. But I can't take any of the other drugs for RLS.

So I'm looking to find in real life, how many RLS sufferers build a tolerance to opioids and how quickly.

Turns out my pharmacist changed distributors at the same time my dose stopped working. She's going to order from another company for my next prescription.

[Shumbah in reply to sweetiepye]

Hi sweetiepye

I Love Buprenorphine it’s an opioid I have no side effects. I was prescribed 2 mg sublingual, I take much less than 1mg works perfectly. I never feel any symptoms.

Professor john Winkleman recommends this drug for RSL .it cost me $700 for a years supply a bought it back to Australia I no longer take any sleeping pills , marijuana nothing just my tiny crumb of Buprenorphine.

[sweetiepye in reply to Shumbah]

That was the first opioid my Doctor had me try. I had too many side effects. I am glad to hear you have found something that works so well for you.. I am starting to worry about finding my own solution .

[nightdancer in reply to Shumbah]

I met John Winkelmann at an RLS conference in Boston in 2009, and had a one on one with him. He is one of the good guys, for SURE!!!!!

[nightdancer in reply to sweetiepye]

I have been taking morphine for 20 years, on the same dose, and actually have reduced it a bit. As raffs says, whatever works. Nothing else works for me but opiates, so it that or nothing, and they work for me. I take slow release morphine, and a shorter acting pain med Tramadol. I would not be here without them. period. I have been on EVERY med known to man that might help RLS, and it is pain meds only for me. I also have massive pain issues for other reasons.

[sweetiepye in reply to nightdancer]

Thank you for replying . I was getting worried that I would run out of opioids to try. A few of them actually made my RLS worse.

[tinabuglaw in reply to Hidden]

According to some of the top specialists in the world studies have shown that, in general, most people who are treated with opioids for RLS do not build a tolerance because it works a different way and the Brain as opposed to those being treated for chronic pain. There are a small percentage that do. After 6 months I went from 5mg to 10. I try to stay at 7.5. but I do have to go up to 10 every 3rd night. So I'm scared and the question is where do I go from here. None of the other drugs worked for me except benzos and I'm more scared of benzos.

[TheDoDahMan in reply to tinabuglaw]

Hi again, Tina,

I've been on 10 mg methadone per day for over a year and don't seem to be building a tolerance, at least yet. I was in Dr B's office last year and spoke with a patient who said that he was on the same dose for ten years without a problem. I think that low-dose methadone patients have fewer problems than those on other opioids, in general. Good luck!

[nightdancer in reply to tinabuglaw]

Have you tried any benzos??? I take morphine, Tramadol and Clonazepam (In the evening for the benzo) Been on the same dose for 20 yrs. They HELP, but it is all trial and error, and as in ANY RLS group you will get the anti drug people, the diet people, etc etc. Trial and error is the only way. 10,000 people could tell you their experience and unless you try it, you will not know.

[Parminter]

Tina, try to increase your dose by very small increments rather than doubling, as you have.

I have pretty awful RLS at 5mg, but no RLS at 6mg. I use liquid methadone, so it is easy to make minute adjustments with a pipette - better than chopping up little pills.

The boffins say that most patients on a dose of, for example, 10mg are able to stay at that dose for an average of ten years, which is pretty awesome.

Your concern is understandable - I have concerns of my own - and if you remain concerned then I suggest you write to Doctor Mark Buchfuhrer at rlshelp.org

I wrote to him with my own, different concerns about methadone and he replied in less than 24 hours. He is an amazing man who really cares.

(rlshelp.org is the home of the Southern California RLS Support Group, which is an outreach of Stanford University, where Doctor Buchfuhrer works).

[nightdancer in reply to Parminter]

Dr. B is the BEST! I have been emailing with him since I had my first online group in 1997. His web site was about the only GOOD info out there and now. He gives a lot of his time.

[Jumpey]

Yep I experience the same on Tramadol and Codeine. I take a month's drug holiday and then they work again. I do this because I don't want to keep increasing the dose. X

[Gmc54 in reply to Jumpey]

Can you tell me how many times you need to take a drugs holiday please? I take tramadol, which has worked for a couple of years, but unfortunately it is not as effective as it was, and my rls is coming back, some nights worse than others. Also, how do you cope while having a break from them? Would really appreciate your help with this.

[tinabuglaw in reply to Gmc54]

Tramadol is there one opioid that can cause augmentation. No one knows why. But talk to your doctor about it and maybe suggest switching to a different opioid.

[nightdancer in reply to tinabuglaw]

yes, it CAN, but rarely. I take Tramadol and have for years, and no issues.

[kelka]

I've been taking dihydrocodeine 30mgs twice at night (usually 6pm and 10pm) for 5years now. Sometimes I panic when I get slight breakthrough that I'm developing tolerance but that's it. I take the first when rls starts and I guess this takes a little bit longer to kick in but that's it.

[Hidden in reply to kelka]

Kelka, is the codeine still working for you?

[Artjr102]

I am also on methadone. I’m taking 7.5 mg.

I believe mine is also affected by increasing my sugar usage. I know this time of year my restless leg has been acting up more.

in the past I have already knocked out caffeine and alcohol.

[Shumbah]

Hi Tinabuglaw

I visited Professor John Winkleman who is currently doing a large study on RSL and opioids in November and he said the evidence shows that do not need to be increased and continues to work occasionally they are tirated once and that is it they continue to work .

If you find methadone is not the drug for you could ask about Buprenorphine.

I am meant to take 2 mg sublingual and take less than 1 mg . Works a dream excuse the pun.

I totally understand your fear , what form is your methadone in ?

[tinabuglaw in reply to Shumbah]

A pill. The pharmacist too me they changed drug companies with the first prescription I had a problem. It's possible that it was just the fact that they used a different drug manufacturer. She's going to order from another company this time. Fingers crossed. I hope I don't have to change. Any side effects?

[nightdancer in reply to tinabuglaw]

For the BEST reference for drugs in general, rxlist.com is the most comprehensive for drug interactions and side effects, the chemical makeup of the drug.

[Anne_liz]

I have been taking codeine for over 10 years. I took 30 mg until a year ago when I halved the dose to just 15 mg because I saw a neurologist (for a different condition) and he thought the codeine was causing me to get migraines. The lower dose continues to work well, only occasional slight breakthrough of rls, so no sign of it losing its affect. My migraines have also almost gone.

[nightdancer]

There are MANY MANY people with RLS on Methadone, especially in the US. It is actually the first chosen opioid by the RLS experts like Dr. Earley, Dr. Buchfuhrer, etc etc, and the US RLS Foundation. SOME people DO build up tolerance to any opioid. Some can take methadone for years, some not. In all the FB groups methadone is discussed, too. I have been taking opioids for years and years after 5 back surgeries and neck surgeries, and have never had to up my dose. They are the ONLY thing I can take for my RLS, too, nothing else works for me, and I have been on every med that exists that might help RLS in the last 30 years.

[tinabuglaw in reply to nightdancer]

Yes. I'm on methadone. It's got the longest half life. That's why it's preferred. It gives the most coverage.

I think I had a problem because if the manufacturer changed. It literally happened overnight --not gradually--when I had been on it for 6 months. I'm hoping that's the case.

I never said people never build a tolerance. But it's a fact that most people taking methadone for RLS do not build a tolerance because it works differently in the brain. That comes straight from Johns Hopkins. I'm hoping I'm not one of the unlucky ones. So I was looking for some input. I'm not sure what your trying to tell me. I belong to all those Facebook groups. I suggested them. Maybe you responded to the wrong person?