Young male under 30 24 hr symptoms and 10/10 pain .
Unable to work
Unable to drive
Suffered since childhood .
Was still on 1200 gabapentin
Prior to Temgesic he tried everything as we do.
I did not think Temgesic would work due to severity of his condition.
He was given a 5 day trial on Temgesic highest dose was 3 sublingual .02 mcg very little help unbearable Nausea and vomiting Zofram did not help .
He was lucky enough to try Subutex stopped the Temgesic and cold turkey stopped gabapentin
Subutex .5 mg sublingual from night 1 YES no RLS , no nausea , no pain.
I cannot understand what ingredient is in Temgesic that differs from Subutex the doctor assures me they are all natural 😆
I am myself found the same thing years ago Temgesic was not for me and I am hearing stories of people switching from Temgesic to Subutex with exceptional results.
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Shumbah
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Interesting. I am on generic Buprenorphine hydrochloride and in the UK can get Sandoz, Accord and Subutec ( invidior brand).The Accord gives me 24/7 cover. The Sandoz and Subutec are nowhere near as good and I get breakthrough RLS every evening for 2 hours.
My pharmacist is aware of the different results so always tries to source Accord brand. I suspect there is a minute difference in strength.
I would therefore suggest trying other brands.
In the case you mention above, the severe nausea and vomiting is something I experienced for the first 7 days but it disappeared when I took cannabis for a week. It's possible the nausea wears off after the first week, if we can make it that far.
Trying different brands clearly makes a difference to others.
You post is really important for people to print off for people wanting to change opioids as most doctors would not realise how different they are for patients who use them for RLS .
Some have the attitude of one dose not work none will.
When I started subutex I had zero nausea the powers that be in Australia insisted I tried Temgesic and I could not stand it, I thought it might be volume related as I would take over 5 not all at once.
I have never had a dry mouth unless I sleep with my mouth open, I wear a nose strip help limit that.
Thanks Shumbah. I don't understand why in Australia, Subutex is only available to treat opioid dependence but Temgesic is readily available. Especially when they both appear to have the same active and inactive ingredients.
Temgesic
Each tablet contains 216 micrograms of buprenorphine hydrochloride (equivalent to 200 micrograms of buprenorphine) as the active ingredient. The other ingredients in the tablet are: lactose monohydrate, mannitol, maize starch, povidone, magnesium stearate, citric acid and sodium citrate dihydrate.
SUBUTEX
Each SUBUTEX sublingual tablet contains 0.4 mg, 2mg or 8mg buprenorphine (as hydrochloride) as the active ingredient, along with the following inactive ingredients:
hello Shumba. I am finding the same , Temgesic is helping but only a little. I am still plagued with RLS symptoms breaking through constantly and still losing sleep. Sometimes I have taken another 400 mcg against the dr’s instructions but it doesn’t seem to do much but make me more tired during the day. I have already asked if I can change my medication to Subutec, the answer was yes but only in 6 months time. I cannot think of any reason for that so think I will try to contact him again. I was interested in Joolsg post about the different brands of subutec and I wonder if I could get the one she recommends. Best wishes as always for your help and advice.
if the saliva, which of course also contains buprenorphine, is not swallowed while the tablet is dissolving under the tongue, there will be - imho - almost no nausea or dizziness under temgesic - or any other sublingual tablet which contains buprenorphine.
but: if the massively acidic saliva accumulates and lingers in the mouth, which can take up to 20 minutes until the tablet dissolves, massive problems with teeth and gums can occur - in addition to possibly also dry mouth after buprenorphine shows its effect .. and side effects.
therefore, in my opinion, one should always spit out the saliva that accumulates. in the same way as people who consume chewing tobacco. this is a special kind of spitting out, in which the saliva hardly comes into contact with the teeth during spitting. of course, the tablet must be held under the tongue.
it's a waste, but teeth and gastrointestinal tract (and thus the reasonably avoided side effects such as nausea, dizziness, constipation, dental problems), are more important than this fact. i personally get annoyed by every single intake - due to this overcomplicated intake .
I was on one tablet per night for about 9 months but apart from the first couple of weeks this dosage wasn’t enough and I suffered until deciding to increase my dose to two tablets or so up to 500mcg in August last year which made a big difference.
I told my doctor about the positive development and she was happy to prescribe a higher dose.
I now take two tablets under the tongue anytime after 9/10pm or later at night due to shift work (or depending on whether I get RLS symptoms earlier in the evening) one after each other over a period of an hour. Maybe I’m leaving it under the tongue too long but with the thought of RLS as the alternate, I’m keeping it there there as long as possible.
If I get earlier symptoms whilst watching tv I’ll take my tablets early but this is only occasionally. It generally takes 30mins or more to take effect.
When I go to bed a couple of hours or so after my initial two tablets I generally take a 1/4 tablet approximately in case and then another 1/4 tablet or so if my RLS starts. So I’m taking anywhere from 400-500 mcg a night. Rare nights I’ve taken almost up to 600mcg (3 tablets) but that’s if I’ve eaten a trigger.
I sometimes wonder whether I have an overactive bladder at night which exacerbates RLS as well but the extra medication after bed generally settles any flare up within an hour.
Sometimes I have woken in the early morning with RLS symptoms and have to take a 1/4 tablet but this is usually rare and it generally doesn’t exceed my 500mcg limit. I don't know why this happens, whether it’s a food trigger or an overactive bladder but a 1/4 tablet usually settles it within an hour.
The temgesic is not a perfect system but at least I’m getting some sleep at night as opposed to none 6 months ago. To be able to lie in bed comfortably at night for any given length of time without the torture of RLS is truly a blessing. It is a blessing that the majority take for granted.
I still have to watch what I eat (such as avoiding sugars, preservative foods such as supermarket pizzas, white bread, pasta that’s not gluten free (?) and msg in foods such as Chinese or Thai) or I suffer more.
I have problems with my teeth and have had quite a few problems with broken teeth since I started on Temgesic in November 2021… but I’ve always had problems with my teeth so it’s hard to pin point whether Temgesic is the culprit as I had many fillings over my 49 years, which puts pressure on the actual tooth. I also have a strong bite which doesn’t help. I brush my teeth with a stronger fluoride toothpaste (10 times the fluoride) in the hope that it helps combat the temgesic.
Tooth problems are an unwelcome side effect and I have always had a fear of the dentist chair. A chipped tooth causes extreme anxiety for me. Despite this, comparing the tooth problems with the suffering of RLS is like comparing a mouse to a lion. Despite the high cost it pales into insignificance.
I don’t suffer from nausea but find it extremely difficult to pull myself out of bed the next day.
As I said it’s not perfect and there’s probably a different brand of buprenorphine that might be better but compared to suffering from the torture of RLS every night (not even able to lie in bed) til the sun rises it’s literally been a life saver for me.
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