Well, Mrs P (my wife) has now been taking Temgesic 200msg for 10 days and the results are very promising. At the moment she is reducing her pramipexole and is now taking 2½ tablets (0.088/0.125) and trying to reduce by a half tablet every two weeks. She takes the Prami at about 7.00pm.
The doctor prescribed 1 or 2 Temgesic tablets in the evening but Mrs P has reduced this to half a tablet each night, half an hour before bed. This gives her a whole night free of Restless Leg symptoms. She describes the sleep as slightly disturbed and she wakes up from time to time but can go back to sleep fairly quickly. Whether this is due to the usual older persons sleep pattern or the Temgesic, we don’t know because Mrs P hasn’t had a sleep pattern for the last decade due to the RL and having to pace numerous times though the night. There’s no RLS breakthrough although she has noticed it can return at about 6.30am if she takes a smaller half of a tablet!
The difference is extraordinary and at the moment with the lower dose, she’s not noticing any side effects. But it is not all rosy! At the moment she’s happy to just get a good nights sleep, but she’s getting quite bad symptoms from mid afternoon and through the evening, until the Prami kicks in.
She is due to have an IV iron transfusion next Wednesday so she trying to stay as she is, to see if the iron makes any noticeable difference to her daytime symptoms.
But I have to say, the Temgesic (Buprenorphine) has made an amazing and instant difference to her life. It’s such a relief to go to bed and know that you won’t be up pacing and waving your arms to get a moments peace!
I have been wondering why her doctor agreed to prescribe the Temgesic and I think the key issue was that she is suffering withdrawal symptoms from the Prami and also that Gabapentin/Pregabalin isn’t effective when you’re still on Prami. And the sleeping tablets don’t stop RLS breakthrough and causes a zombie state. And so if the doctor is going to prescribe an opiate, it may as well be Temgesic/buprenorphine which is considered to be more effective and safer than others.
I think if you make a case to your doctor on this basis, you’ll stand a good chance of success if you want to try Temgesic.
Good luck
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puzzler1
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Thanks for the update puzzler. It is indeed looking promising. I am very happy for the two of you.
Some comments on your story. You describe slightly disturbed nights and afternoon / evening symptoms. That may be lack of coverage from te buprenorphine, but more likely, both may be increased RLS or withdrawal effects from the reduction of the pramipexole. Once she is off the pramipexole, hopefully these aspects will subside in a few weeks.
You wife this takes about 100microgram (mcg) of buprenorphine. That is only a little more than the 75 mcg of the buccal patch that dr Buchfuhrer prescribes to his patients. Other may need more, but I always try to find the lowest effective dose.
In sum, looking good and may even improve once the pramipexole gets out of her system. Keep us posted.
This is great news indeed. Thanks for the update.
Mrs P is still on quite a bit of pramipexole and hence will still be suffering some augmentation, i.e. the earlier symptoms. This should disappear.
It's truly amazing that her doctor agreed to the temgesic and I can't think this is because Mrs P is suffering withdrawals and gaba/pregab not being effective. There are many members of this forum who have expereiucned being in this same position and GPs, especially, have flatly refused any opiate at all.
I'm in a similar situation. It's 7 weeks since I had mine and I think I notice an improvement in symptoms. They're just not quite so intrusive and at times I need fewer meds to control them. Of course, hubris intervened and the legs have kicked off in the last few minutes unexpectedly.
I too am a victim of augmentation so not in the optimal category for improvement following iron infusion. I notice on the US rls forum there are a number of people who have had multiple infusions even though their symptoms were still present - at least to a degree - after the first one.
That is something I've felt too. At times, I have been able to do with relatively fewer medications. But I have not had any sort of consistent relief. I read a few people talking over here about IV Iron not working so well once you've augmented. I hope I'm not one of them.
Brilliant! And so lucky. I’m still waiting for my neurologist to reply to my GPs request for permission to prescribe. Three weeks so far. Will he reply? Of course not. Why should he? He’s too busy curing RLS.
Thank you for your report. I read it with great interest and congratulation.
I am exactly in the same position as your wife. Slightly disturbed sleep, but falling asleep again more or less immediately. I drink quite a lot of water during the evening so it is not astonishing that I wake up more often.
I also have daytime Rls ymptoms in the afternoon and evening, some days quite uncomfortable and some only slight. As Manerva wrote I also think this is because of reducing Pramipexol (still 0,05 mg). I am now at a very low level with the Prami and therefore a few nights I woke up feeling Rls sensations. For this reason I have raised the Temgesic to 150 mcg, hoping to go back again to the lower level some time in the future.
On the leaflet of Temgesic it is stated that a common side effect could be low blood pressure. I was hopeful the have this side effect since my B.P. is quite high. Abut alas, it remains still high, so the Temgesic does nothing to reduce it in my case. Well, the whole (Corona) situation may have influence on this.
Hi yes I was on them very bad made me feel bad then I went back to doctors then they sent to see a nearogist the best thing happened she put me on pregabalin 75 mg 1 at 6 pm and 1 at 9 pm the best nights sleep for a long time all the best Henshaw 241241
I noticed the trouble you're having with medicines.
I am also "blessed" with RLS and take Pramipexole, taking 0.52 "at Night". I've put the time of taking at night because that's what the Dr. ordered. However, I found that it was not having any effect and took over 3 hours to show any effect. I was rolling around and "cycling" in bed every night, having to get up for a couple of hours with my husband being on the receiving end of some of the "dance routine(s)". However, one day, due to circumstances, I needed to take the Pramipexole earlier. I took it at 5.00 pm and Viola!! When I got into bed, I went off to sleep very easily. After this I tried taking the Pramipexole at 5.00pm on several occasions.
Every time my sleep was very good and if I woke in the night I easily went back to sleep, but when I took the Pramipexole as prescribed, back to the old pattern!
The only problem occurs if I forget to take it on time, or before 6.30pm. I can reckon on experiencing bad effects at least until 02.30am
I told my neurologist what I'd done and the results. She was surprised and didn't think that the results were due to taking the medicine earlier, but did agree to me taking them earlier.
This may seem a relatively minor thing to do, but just think of the effect if I'd continued taking the medicine as prescribed:
Misery, unnecessary increase of medication, side effects, break down of relationship with partner, fatigue etc. as examples. I'm sure you know more.
I'm still taking Pramipexole but don't feel so tired but just that change in taking medicine has caused quite an improvement in my life.
If it works, discuss it with your GP. I do appreciate that these things can work differently for different people, but I think it's worth a try.
Great new s you got the bupromorphine. I'm still experimenting with it . I did take one in morn and one in eve had quite a few good nites .Then tried the 2 in eve ...it varies but I am stil getting rls at nite sometimes . I do have a high tolerance to drugs so not sure wether to try 3 . It's difficult knowing g wots the right dosage were all different
Yes, my amazing consultant gave me Temgesic / buprenorphine with very little resistance at the beginning of October. Can I ask what country you're in please? At the moment I'm only taking it in the evening and get a good nights sleep. I'm still slowly reducing and withdrawing from Prami and putting up with RLS symptoms in the afternoon and evening, although it does, on the whole, seem less bothersome. I've also had an iron transfusion a couple of days ago but I haven't noticed much difference yet.
Like you, I'm experimenting with the dose but find that three quarters of a 200mcg tablet about half hour before bed usually sees me through the night with no breakthrough. If I try taking less, I get woken up around 5 or 6 am. When I'm off the prami, I'll try controlling it through the day as well. I'm pretty sensitive to drugs but as you know, Shumbah in Australia takes a higher dose with no issues.
Hi I'm in England, Hampshire . My doc was ok about it im also experimenting but finding I need 2 x 200mcg at mo I've taken 3 on a bad nite . Also stil taking 1 pramiprexole I think its 0.08 need to reduce that to . Will keep in touch good luck x
4 weeks ago I had managed to reduce my Pramipexole to zero and then ramped up Pregabalin to 300mg. After two sleepless nights my doctor prescribed 35mg Codeine, which with 2-3 tablets taken during the night, helped but my sleep was still badly interrupted. Then the tablets ran out and there was a delay in my GP getting back to me and I had another sleepless night. However, the next day they did get in touch and I managed to persuade her to prescribe Temgesic for a month's trial (dosage: take 1-2 as needed). My normal pharmacist did not stock it but I found one that could get it in that afternoon. Interestingly both the GP and the pharmacist mentioned "palliative care" re Temgesic.
So last night I had my first dose of Temsegic being 2 tablets at 10pm. 30 minutes later my legs and arms had stopped jerking and I went to bed. I finally woke up in a sweat (side-effect) at 9am with no RLS and so far (5:30pm) I've not had any twitching.
However, and this is a big however, I've suffered badly with the side-effects: feeling faint, feeling sick, sore stomach & loss of appetite. I've slept on and off most of the day and am only now being to feel able to move around. I had not realised just how powerful a pain killer this was and after nearly 20 hours it is still having an effect.
So tonight I'm going to just take half a tablet and I'll report back as to how it goes tomorrow.
Thanks for this story. But yes, you didn't start out low. Temgesic is really strong and my consultant (after discussing it with dr B) advised to start with half a tablet. And increase slowly, depending on need and potential side effects. Hopefully tonight will be as good in terms of sleep / lack of symptoms, but tomorrow much better in terms of no or slight side effects. I had almost none and they were completely gone the 3rd evening I took the Temgesic/buprenorphine (1 tablet of 0.2mg, although I started with half tablets, but had to take the other half in te middle of the night).
Hi I agree with Lotte. When I started I only took half a 200mcg tablet about 30 mins before bed. I had a little nausea and wooziness and a headache for a short time in the morning but these side effects disappeared after a couple of days.
I’m still coming off prami (now taking just 1 tablet) and so I’ve increased the Temgesic to half a tablet at 5.30pm and a whole tablet about an hour before bed. The withdrawal from prami is pretty bad but the Temgesic is giving me relief. I don’t know where I’d be without it!
I think you’ve given your body a bit of a shock by taking 2 tablets together.
Hopefully you’ll gradually find a dose that suits you.
Keep in touch and good luck. Where abouts are you?
Yes well I now know that I took too much! I had not slept at all the previous night and needed to sleep.
So last night I started off with half a tablet but I was up again after an hour. So I took the other half and after about 45 minutes it kicked in and I was able to sleep until about 9am. So today I've felt better and also have had no RLS symptoms. Tonight I'll take a 100mcg about 45 minutes before going to bed and see how it goes.
RLSofmanyyears, what is the dosage of one of your Temgesic tablets? I though they only cane in 200microgram = 0.2mg. But maybe there are other ones too?
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