methadone ? Tolerance: hi, I am... - Restless Legs Syn...

Restless Legs Syndrome

21,616 members15,318 posts

methadone ? Tolerance

Mongolia2020 profile image
21 Replies

hi,

I am wondering if I am developing a tolerance to methadone, and, if so, where too from here? Sorry about the long post but I think if anyone is able to help me, they will need details.

Aafter augmenting repeatedly on dopamine agonists I finally withdrew from them cold turkey on on 2 Dec 23, not realising that such a hellish time was ahead of me, nor how dangerous it was to stop abruptly.

After 1 week with no meds, then 1 month on gabapentin then Pregabalin, I was starting to think I would not live to my next birthday. Codeine gave me some relief, but I needed a large dose and I felt completely “drugged up”. Dr agreed to allow me to go on methadone. Started low in mid Feb and have titrated up to 7.5 mg methadone at night. Side effects of sweating, nausea, reduced appetite are now minimal. Constipation is difficult to manage but I’m doing ok. My RLS symptoms were reducing with each increase in methadone. My heart rate was falling quite low when sleeping and would drop to 36 or 37 at times at night and I was falling asleep after every meal, but

now I can get through the day without falling asleep, and my heart rate is not dropping as low, but my RLS symptoms have started to increase again.

am I just getting used to the methadone and have to increase the dose to get same relief? I don’t want to keep doing that.

Should I go up to 8.25 and then if necessary 10 mg methadone?

I am scared that if it doesn’t work well enough, the higher I go in dosage, the harder it will be to come off it.

And if I did come off it, what other alternatives are there.

Written by
Mongolia2020 profile image
Mongolia2020
To view profiles and participate in discussions please or .
Read more about...
21 Replies
707twitcher profile image
707twitcher

do you intend to try buprenorphine? Your post from a week ago had several suggestions about it. I use buprenorphine not methadone, so I’m not as knowledgeable about it. But I believe that your dose of 7.5mg isn’t close to the recommended upper limit, and I think we all wind up titrating up a bit when starting opioids, so I wouldn’t be afraid of increasing your dose. But given your experience with side effects, I suspect buprenorphine might be better for you. It certainly doesn’t hurt to try, as you should be able to switch between opioids without withdrawal issues.

Mongolia2020 profile image
Mongolia2020 in reply to 707twitcher

Thank you for your input. I’m just trying to gather as much info as I can before my drs visit on Tuesday re whether to increase methadone or try switching to buprenorphine. I’ll discuss with him, but he really doesn’t know a much about RLS. I am so thankful for this form and the RLS foundation to be able to advocate for myself. I was wondering what, if any, other suggestions might come from others’ experiences. I appreciate your response.

Joolsg profile image
Joolsg

As you only withdrew from DA cold turkey in Dec 2023, it is still early days. Withdrawals can last several months.As 707twitcher says, you are on a low dose and can still increase.

Dr Winkelman's opioid study/register confirms that an upwards adjustment in the first year is extremely common.

Mongolia2020 profile image
Mongolia2020 in reply to Joolsg

Thank you Joolsg

Nikos64 profile image
Nikos64

I’m not sure about methadone, but I take oxycodone which is also classified as a strong opioid.

When I was started on oxycodone 5mg/day a year ago, I asked my doctor whether I would develop a tolerance to it and would require progressively higher dosages. I am definitely NOT interested in going down that path!

The doctor assured me that would not be the case. A year later he was proven correct. Although, I have bad and good days with my RLS, I would say that oxycodone provides me fairly consistent relief.

I also have some back issues and when I was first taking it the oxycodone provided relief for that. A bonus! However, this is no longer the case. Oxycodone at this dose is worthless for that purpose. However, it still works for RLS and i cannot feel any side effects.

Please consider that RLS is a spectrum disorder .. my case is different than yours and people react differently to medications. Perhaps you can switch opiates ? The only concern I would have is that methadone has a long half life and switching to a shorter half life opiate like oxycodone may prove difficult to switch! Personally, I would not up titrate methadone. It’s a powerful drug with many side effects. If anything, I’d give it more time at the present dose to give your body a chance to adjust. Btw I switched from Tramadol 100mg to oxycodone and it took me about 2-3mo to adjust. Moral of the story … give it time

Good luck !

Mongolia2020 profile image
Mongolia2020

thank you Nikos64, I appreciate your input. It is so valuable this learning from each other. A few months ago, before I found this site, I felt so alone. This forum is so helpful.

Merny5 profile image
Merny5

I have been on methadone for about a year and a half. I had to increase one time to 10 mg. I have been fine at this dose for a long time. You should not need to keep increasing the dose once you reach the dose that covers your symptoms. Good luck.

Qalba profile image
Qalba in reply to Merny5

This my experience as well.

Mongolia2020 profile image
Mongolia2020 in reply to Merny5

Thank you. Wow, did you go to 10 mg in just two steps? It has taken me about 4 months to get to steady state at 7.5 mg. I started at 2.5 and when I went to 5 mg the side effects were so bad I had to drop back. I have not yet reached the stage that the methadone covers my symptoms without breakthrough, so I will go up a little more. Thanks for your input.

Merny5 profile image
Merny5 in reply to Mongolia2020

Yes, my neurologist started me at 5 mg

Mongolia2020 profile image
Mongolia2020 in reply to Merny5

Any side effects?

Merny5 profile image
Merny5 in reply to Mongolia2020

Yes, but nothing like severe RLS. I have constipation, sweating and nausea. I’m not 100% sure that the nausea is from the methadone. Methadone truly gave me my life back.

Mongolia2020 profile image
Mongolia2020 in reply to Merny5

I had those as well, including nausea, so nausea probably is from the methadone. By increasing the dose very slowly I have minimised the side effects, except for constipation, but it is taking longer to get the RLS under control. But I agree with you - it has given me my life back too, and I am hopeful that in another few months I will be almost normal again!!

Mongolia2020 profile image
Mongolia2020 in reply to Merny5

Thank you Merny5. Wow, did you go to 10 mg in just two steps? It has taken me about 4 months to get to steady state at 7.5 mg. I started at 2.5 and when I went to 5 mg the side effects were so bad I had to drop back. I have not yet reached the stage that the methadone covers my symptoms without breakthrough, so I will go up a little more. Thanks for your input.

TheDoDahMan profile image
TheDoDahMan

The famed and learned Dr. Buchfuhrer started me out at 10mg/day of methadone and my life was immediately changed greatly for the better. That was 5 years ago and I've never felt the need to ask for an increase in dosage. My only side effect is some tiredness during the day, but no nausea, sweating, or constipation. I'm a 78-yr-old male in the US. We all vary in our sensitivity to opioids, but 10mg/day is still considered quite a small dose.

Mongolia2020 profile image
Mongolia2020

thank you. Out of interest, is there any problem travelling with a methadone prescription? I am a little nervous to do so.

SueJohnson profile image
SueJohnson in reply to Mongolia2020

If it is just a prescription it probably isn't a problem but I assume you mean the medicine itself. You need to have it in the original container and a note from your doctor with you.

Mongolia2020 profile image
Mongolia2020 in reply to SueJohnson

Thanks Sue

TheDoDahMan profile image
TheDoDahMan

I wouldn't go to Russia!

SueJohnson profile image
SueJohnson in reply to TheDoDahMan

My second laugh for the day!

Mongolia2020 profile image
Mongolia2020 in reply to TheDoDahMan

😃

You may also like...

RLS and methadone tolerance

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

Methadone

days ago I started methadone. Started with 2.5 mg on the first night. It didn’t help my rls...

methadone or buprenorphine

After augmentation and the horrors of withdrawal, I started on methadone in Feb this year and have...

Methadone and cognition

I feel much more stupid on methadone. Could this be related to my dose? Take 10 mg around 10 pm,...

Methadone and Anxiety

twice at night five months ago, then increase it to 10 mg, twice nightly. I am reluctant to...