I'd like to ask how others are getting on with Temgesic.
I started on 200mcg (1 tablet) Temgesic last November and it immediately made such a difference to my nights - I finally slept right through! However after 3 months I needed to up the dose to 1.5 tablets (cut in half) and occasionally 2 tablets. I realised that I was becoming tolerant to this opioid and decided to come off it for a while before taking it again. It seems that it takes 8 days for Temgesic to be flushed out of the body and so I crossed over to the dreaded dopamine agonists again. I went on to Pramipexole as it works quicker than Ropinirole, starting with 0.088mg then upping it to 0.18mg as the lower dose did not work for me. However the 0.18mg was still not enough and I had little sleep (and strangely the RLS was affecting my arms more than my legs this time). Eventually after 12 days I managed to get a short course of Zopiclone so that I could sleep and then after 3 days I went back on to the Temgesic. Now however, I'm still being jerked awake several times during the night and I also cannot snooze during the day as my body jerks quite quickly.
So, have others experienced something similar, or completely different?
Note that I'm also on 300mg Pregabalin.
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RLSofManyYears
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Hi, I've also been taking Temgesic since November of last year. I take 400mcgs and I was also taking 300mg of Pregabalin which I reduced to 200mgs. I'm in the process of reducing my pregabalin down to 100mgs and have noticed a re-appearance of RLS symptoms in the evenings. I'm putting this down to the reduction in the pregabalin dose. I split my Temgesic dose and take 200mgs at around 6.30pm and the other at around 10.15pm.
I'm keeping my fingers crossed that it stays this way. Having had such a dreadful experience with DA's, I just can't see myself taking them again. 🤞🤞
Thanks for your feedback, I'm glad to hear that Temgesic is working well for you.
Well I took 200mcg at 21:30 last night but gave up at 3am and took another 200mcg tablet. So I finally slept but I've been woosy all day. Once things have settled down with the Temgesic then the plan, like you, is to try to reduce the Pregabalin as well. I've been prescribed 25mg and 75mg tablets with the idea of reducing in steps of 25mg. However, like you, when I tried to reduce from 300mg to 200mg then the RLS started appearing again (this was in conjunction in taking the Temgesic).
I think I'll try taking the Temgesic at 20:30 and then again about 22:00.
I take my 100mg Pregabalin tablets at 15:30, 18:30 and when I go to bed.
Yes, I also feel a bit tired, tends to be in the afternoons, but if I'm doing something, I don't notice it too much. I played around with the timings of my meds and settled on the aforementioned regime. I hope that your new timings worked out better for you.
Hi After stopping Ropinirole, I commenced using Targin but stopped because of side effects and started on the Temgesic 200mcg about 4 months ago. Apart from the usual nausea, pounding heart I have excellent RLS control. The problem is I have opioid induced insomnia. No RLS but no sleep!. After lots of research and with my specialist's approval, I embarked on a "combination/rotation" approach. So for about 4-5 days in a row, I take Temgesic. I split it in half at night -various times depending on my night time activity. (This helps with side effects.) I have to have 0.5 Zanax to help me sleep.
On the other nights I take 0.25 Repreve/Ropinirole. I usually don't need Zanax with this. So far it has been amazing. I have not increased the Ropinirole or the Temgesic.
I have been on this approach for about 5 weeks. I had been on Repreve for about 15 years with a couple of drug holidays and came off it again in January.
Interesting that we've a roughly similar approach 😀. How do you cope with taking the Ropinirole, given that it takes a few days to become effective? I still have Pramipexole and Ropinirole tablets from prior to the Temgesic and initially tried the Ropinirole last week but it wasn't working right away and so I swapped over to the Pramipexole. I would only use the minimum or twice minimum of these DAs as there is no way I'm ever going back to higher dosage!
I have not had any problems with Ropinirole working straight away. (I did not use the pramipexole - gave me insomnia.) I believe that it does work from the onset, as it has been used to assist people who intermittedly require it ..eg long haul flight. The only problem taking it this way, was getting used to the initial side effects.
I am on Temgesic for 8 months now. I am still taking a bit of Pramipexol (some crumbs = 0,03 mg altogether) which I had wanted to stop but postponed it due to an operation.
Temgesic 150 mcg in the evening, appr. 1 hour before bed and 50 mcg in the afternoon because I notice slight RLS in the afternoon. Though not every afternoon. Which may come from the Pramipexol. But this is all work in progress.
On the whole Temgesic still works and , as I wrote in some other post, a bit RLS, maybe twice a week, is nothing to what it was before Temgesic.
Hi, how do you manage to get 50mcg Temgesic? I thought 200mcg was the smallest tablet size. I've tried cutting the tablet in half or even nibbling it but it's never straightforward!I'm pleased to hear that you've be fine for 8 months now. Excellent!
I cut the very small tablet in half with a tablet cutter and then break one of the two halves with my fingernails or with a knife on a plate - resulting in 2x 50 mcg.
It works, but I agree that the halves or quarters are mostly of different size. Sometimes I cut a few crumbs off and take the smaller half with the crumbs etc.
I know it sounds funny, but as long as I sleep, so be it.
A friend of ours, a doctor, always said, when asked by a patient " but, doctor, I can`t take half or a quarter of this tablet, it falls into crumbs ..." , he used to say "then take the crumbs ".
Sorry for the confusion on my ID, but I had 2, Berteau and fishinphil1946. Fishinphil1946 was 1st so Berteau is not correct. We are all different, but here is my 2 cents. I have been on a lot (2mg recently) of pramipexole (P) for 9 years. My case of RLS is complicated by peripheral neuropathy in my feet and some vein valve issue in my lower legs. I believe the burning, crunching, cold, and no feeling in the bottoms of my feet are neuropathy. The twitches, occasional arm spasms, and the usual cheapy tingles are RLS similar to Parkinson's. I take 1200mg gabapentin for the neuropathy and the P for the RLS. The first line of treatment for RLS should be a ferritin test and tablet iron plus Vitamin C or iron infusions. Cancer can affect the test. Iron is needed to convert an amino acid to dopamine. Dopamine shuts off completed nerve impulses. However, taking P for several years or high doses makes the brain shut off natural production and drugs later become ineffective. In addition, P promotes excessive compulsive behaviors including gambling, shopping, and eating. When I get up every 2 hours either from RLS, PN, or to urinate, I eat. I have gained 60 pounds in 9 years. I am reducing P by 0.125mg every 2 weeks for 32 weeks. At 3500KCal/pound of fat and 60 pounds, I need to loose a net of 210,000KCals at 1000KCals less per day for 210 days or 7 months. Don't start pramipexole unless you have exhausted all options and stay on this site for options. I am uncertain what todo after P=0mg. I am tired of being overweight!
When my feet are really bad and I want to cut off my feet, I put on a pair of compression socks. I use a simple device called a Sock Slider to get them on and my wife to take them off. Another easy "fix" is to painfully stretch the calf muscles for as long as you can stand it. I sleep with a CPAP because my weight has shut off my breathing. At times I cross my not-so-bad right foot over my always bad left foot. Everything is worse when I am over tired, but I don't nap. The TV or computer screen brightness helps put me to sleep. Lately a mild sleep aid, 200-400mg trazadone relaxes me. There are several dietary tips including 2 tsp of yellow mustard.
You could consider checking your serum ferritin. If your iron levels have reduced, this may be why you need higher doses to cover your symptoms. It's particularly important when taking a dopamine agonist to make sure your iron levels are high as this lowers the risk of augmentation appreciably (see recent post by widebody for the science).
Thanks. I started iron sulfate pills but stopped because I will have a ferritin test. I was able to find a ferritin result from July 2012 and it was 340. The test was 3 months after bladder cancer surgery and I was just starting BCG "chemo" therapy. I am now cancer free but having cystoscopy exams yearly. I hope the ferritin level is low because iron supplements seem a lot better than any medications.
I've never had my iron levels checked although it was mooted with the doctor a year ago. However the pandemic has stopped any chance of a test. However I have been taking "Iron Bisglycinate with Vitamin C" (17mg Iron, 100mg Vitamin C), two tablets every other day for the last 4 months. Does't seem to have made much difference though.
I have been taking Temgesic (only) since Nov last year (2020). I take one 0.2mg in the evening and sleep through tje night without having to get up or urges to move. As I still experienced mild daytime symptoms regularly starting around noon and increasing towards the evening, I took another 0.2mg tablet in the morning for a while.
Downsides are that 1) I experience sweats, not quote similar to menopausal sweats (they don't last as long and are more peaked), and 2) I suffer daytime fatigue and have difficulty concentrating on work that requires a bit of serious thinking. This second set of effects reduces my quality of life importantly. My condition is still good; recently we went on a 2 day walking trip and I had no trouble walking about 20km a day.
So the Temgesic is very good for my RLS and sleep but hasn't improved my QoL. I have just learned that the Temgesic induces some CSA in me, not extremely so, but enough to take it seriously and that it may be responsible of the fatigue. And the fatigue may also be a direct side effect of the Temgesic.
I am disappointed, because I had to come off Oxycontin because of side effects (depression) and Temgesic/buprenorphine is supposed to have a lower incidence of side effects. Well, I the lucky one.
As ever, and as RlsOfManyYears also experienced, there often is a price to pay.
I SO wish scientist knew more about (and more of them focused their research on) the causes of RLS. If we accept the brain iron deficiency (BID) theory, why does no-one seems to focus on elucidating why the iron doesn't reach the substantia nigra in the brain? And why don't we hear about follow-up research on the adenosine issue? Maybe I should put these questions to the US rls.org as they stimulate a lot of RLS research.
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