Experience of Temgesic

[RLSofManyYears]

I've been taking 200mcg Temgesic for 3 months now and and generally it has allowed me to sleep right through the night. I'm also taking 300mg Pregabalin as well as gentle iron and vitamin D.

However for the last 10 days or so I've been woken up in the middle of the night with my legs/body jerking. After 30mins to an hour I can get back to sleep and will then sleep right through. I am not really wanting to increase the dose and so I'd like to ask how others are getting on with Temgesic. Whilst I realise that our experiences of RLS are all different, I also know that the use of Temgesic for RLS is relatively new and so I would like to know how you are getting on with it.

[Renaul]

I take Temegesic 200mcg at night. Most nights I am up once for about an hour but get very good length and quality of sleep either side of this disturbance.I have leeway to take a second pill and sometimes I do. Particularly if I get symptoms late afternoon or early evening.

This has not led to tolerance of Temgesic. I take a second dose once or twice a week. Some weeks none. So I am not worried about addiction.

[hausbauer]

I take 150 mcg at night.

Most nights I sleep right through.

Some nights I get slight RLS while still awake trying to sleep, but I fall asleep after some time nevertheless, without getting up.

Some nights I wake up after 2-4 hours, feel RLS, have to get up, do something like reading a little or watching TV, go to bed again after 30 to 45 minutes and sleep for another few hours.

On the whole Temgesic is a great improvement, I can easily put up with the above mentioned days - when I compare them to what I had without Temgesic.

[RLSofManyYears in reply to hausbauer]

Thanks, see my reply to rls-insomniac.

[rls-insomniac]

I take 400mcgs of Temgesic and 200mgs of Pregabalin. I take 200mcgs of Temgesic around 6/6.30pm to help deal with the evening symptoms. 200mgs of Pregabalin around 9.00/9.30pm and 200mcgs Temgesic an hour later.

This seems to help most of the time but I do still sometimes suffer with evening and nighttime symptoms. They are fairly mild and do go away fairly quickly when I get up and move around. At night I tend to go downstairs for an hour or so and then go back up to bed.

That said, my symptoms are so much more manageable than when I was taking ropinirole. I don't think I'll ever be completely symptom free as I think my dopamine receptors may have been permanently damaged due to long term and high dose use of a DA.

[RLSofManyYears in reply to rls-insomniac]

Judging by your reply and also from hausbauer it seems that what we're experiencing is roughly the same. I agree that our current symptoms are so much better than with DAs. Being up once or twice in the night is nothing compared to suffering RLS during the day and at night. I'm still not sure about upping my dose and I'll leave it another week.

[rls-insomniac in reply to RLSofManyYears]

Yes you are right in what you say. My symptoms are so much better thanks to the Temgesic. I think most people take around 200mcgs but as my post DA symptoms were still bad my consultant agreed that I could take 400mgs. I wouldn't rush to take any more than you are now unless your symptoms escalate. I doubt very much that my consultant would agree to increase my dose as he feels that I'm highly medicated already. I hope that things improve for you.

[Joolsg]

That's still quite a low dose of Temgesic. Shumbah was taking a higher dose so you're all still able to take more if needed.It's very encouraging and I'm delighted It's helping you.

[H12X]

I have taken 200 micrograms of Temgesic for almost 15 weeks and it has proved to be a life saver. I can't remember sleeping as well for almost 30 years of taking everything that the consultants prescribed for me. I don't know how long this will last but every morning I am grateful for another reasonable night's sleep. Yes, my sleep is broken once or twice but I expect most people experience that. I hope Temgesic helps other sufferers, thank goodness for members of this forum because this is where I discovered Temgesic. How easy it is for some to say we shouldn't use opioids, I say their RLS can't be strong enough to completely destroy their lives. Buprenorphine has given me back my life.

[davidadill]

Temgesic is an opiod. If it like codeine then efficacy will start to wear off after a few months. When that happens I cut the dose by 6mg per night until the dose is zero and then suffer for two weeks. After that efficacy dramatically improves. Once I stopped codeine without tapering it off and had terrible chest pains and ended up in the hospital. It was not a heart attack, but it was very painful. I am not sure what the temgesic dose is, but probably cutting it by 10-25% per night would be a safe strategy before going through the two weeks of suffering.

[RLSofManyYears in reply to davidadill]

I'm not a medical person at all but I think that codeine and Temgesic affect a person in different ways. I was on codeine for a few months but it did not make any difference at all. Whereas as soon as I started taking Temgesic then the symptoms stopped right away.Perhaps there is someone here who is better qualified re the efficacy?

[davidadill in reply to RLSofManyYears]

How many mg of codeine did you take?

[RLSofManyYears in reply to davidadill]

It was 30mg but I cannot remember how many I took. Sorry.

[davidadill in reply to RLSofManyYears]

The first night that I used codeine there was no benefit, but after that there was a profound benefit. I take it 30 minutes before bedtime and do 40 deep knee bends and lift each knee so that it is horizontal 80 times.

[RLSofManyYears in reply to davidadill]

I've got a vibration plate that I used to stand on for 10 minutes at a time and it gave me relief from the jerking for a while, enough to help me get back to sleep. I've not needed now that I'm on the Temgesic although I think I should start using it again for general fitness. 🤣

[davidadill in reply to RLSofManyYears]

Did you try codeine two nights in a row?

[RLSofManyYears in reply to davidadill]

Yes it was for a week or two.

[Shumbah]

I have been on buprenorphine 2mg for 16 months , just living a normal life now Thank god

[RLSofManyYears in reply to Shumbah]

Could you please clarify the dose? The minimum is 200mcg (micrograms) and so 2mg (milligrams) is 10 times that!