Hi for those who have tried 1st ,& 2nd line therapies and are now on an opiate which do you find is best for you and mention side effects if you have them . Has anyone had success with just Codien and if so what dose was needed. I am in the UK so not sure what they will prescribe here. I have done Ropinerol for 15 years then Tramadol (and Lyrica) for about 7 years, have augmented on both and need a new treatment. Was given Shortec ( oxi codon) I didn't like it . Plus side i- t kicks in much faster than the other 2 . It eradicates all symptoms . Negative . Works for a short window of time, maybe 4 hours. It suddenly stops working when you have been asleep for a couple of hours. You have to get up , pace around and take another dose . Not ideal. I also makes me very aware of my heart beating and so it's hard to sleeping with all that going on. GP has said I cam try Longtec .
I would also love to know if any of you have been able to successfully go back on dopamine agonists after a break from
Them. A drug holiday was suggested to me .
TIA
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Mandytel
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I have been on a 20mg patch of Buprenorphine for the last 2 months. So far I would say my experience has been extremely successful. Buprenorphine helped me withdraw from Neupro and keep RLS symptoms at bay. The problem with the patch is that it is not effective for 7 days. After 5 I start getting jumpy. Also, I am experiencing some depression and insomnia, but as I have said, compared to how awful I felt on Neupro, I am willing to deal with these side effects. If you have access to Buprenorphine tablets, you may be able to minimize all of these problems.
As far as a dopamine agonist holiday goes, I am not qualified to give you an answer. I can only say the I will never again take another dopamine agonist. Augmentation was truly the worst experience of my life. I realize this may seem overly dramatic, but when I was augmenting on Neupro I really thought I was close to giving up the ghost. After all the suffering I felt ready. But as is often said in this community, we are all different. Your experience may be better. Don't know.
Hi Riversw, just wondering were you on a weaker patch before the 20mg? Do you have bowel issues on it?
I’m on 10mg patch with endone added on occasionally and am seriously suffering with these things but need to increase dosage due to back pain. Wondering if I’ll be worse off on a stronger patch.
Hi Nanpat, I was on a 10mg patch initially, but the withdrawal symptoms were breaking through and I wasn't getting any sleep. The 20 mg patch has for the most part taken care of that but now I have noticed a dip in my mood. I believe I am fighting depression a bit. Other than than I have no other side effects from the Bup. I hope my answer is of some help to you. Take care Rivers
I agree totally with you about augmentation from Neupro and I certainly would not advise going back onto DAs. i believe all the evidence on this site says the same.
On buprenorphine patches i found that the 20mcg./hr patch was too much drug for me. I am now on only 5mcg/hr supplemented occasionally with a 200mcg tablet and that keeps my RLS at bay but even that small dose is giving me similar to your side effects namely depression, anxiety and insomnia as well as nausea. Do you get nausea and if so how do you cope with that?
Hi Devchar, I would like to experiment with the dosing of Buprenorphine as well. Perhaps at a smaller dose I would not have the anxiety/depression (I don't know what to call it) I am experiencing but in Brasil the tablet is not available. Also, I could use the tablet to supplement the Bup when the 7 day patch dies after 5 days. I am fortunately not having any nausea. That must be difficult to deal with. I will add a minor side effect that has started since I started the Bup. Excessive sweating. I wonder if that is happening to you. It has been hot here, but I am not usually drenched the way I have been. Many changes of shirts a day. Take Care R
I would suggest that trying a lower dose patch for you probably would not work. The patches don't "die" after 5 or 6 days - the effectiveness just drops. The peak effectiveness is day 2 - day 4. At day 6, the effectiveness level is probably down 30% from peak. The fact that you need to replace your patch after 5 days indicates that you really need the peak dosage you are getting, and a little more might carry you an extra day or two (but I don't think you can go higher than 20mcg, right?)
Here's the chart showing patch effectiveness over time. (From Science Direct, July 2013)
If I understand your reasoning and the chart correctly, you are right in concluding that I need the peak dosage. I can also conclude that when I put a new patch on after 5 days, it is a good idea that I leave the old patch on for a couple of days or more specifically until the patch's expiration date after 7 days. This way the old patch can supply a modicum of medication until the new patch fully kicks in. Does this make sense or is my reasoning convoluted?
Thanks for this information. It is extremely helpful. Do you think this indicates that my RLS symptoms or perhaps DAWS are relatively severe since only the patch at full strength succeeds in suppressing the need to move and jumpiness? Today, I am on the 5th day of a patch and I woke up this morning with that ole RLS feeling in my upper left thigh. Nothing awful but it is there. I will put on a new patch tonight. If I didn't I would probably have a pretty bad night.
Thank you for your insight and I hope my response makes sense. Sorry it took me so long to respond, I simply missed your post.
I agree. However, I’m not sure about leaving the old patch on for a full two days of overlap? Fine if you don’t have worse side effects from the overlap. But if side effects are a problem, I’d try shorter overlaps. I personally put the new patch on around 5pm and remove the old one the next morning. That way I get the overlap for the first night, but by the second night the new patch is fully effective.
It does sound like your RLS (or DAWS) is fairly severe. Although a 20mcg patch is only the equivalent of 1.2 mg of sublingual, and I believe 2mg is commonly used/needed. So not extremely severe. Maybe it abates over time? You could experiment every month or so by delaying the new patch by 12 hours or so to see if you still need as much. Having a sublingual backstop if needed makes experimenting easier if you wind up being able to get some.
Sorry for the delay in my reply as your email went into my spam file.
I certainly get alternate hot & cold sweats especially after eating breakfast and less so at other times during the day, but temp here only 10degrees so mine defintely from the buprenorphine or withdrawal.
I want to correct one thing in your post. You can't augment on Lyrica.
I agree with RiversW - you want buprenorphine. It lasts for 24 hours. Longtec isn't much better than shortec altho they advertise it that it will last 12 hours, it doesn't. It only lasts 4 to 5 hours.
I successfully used codeine 30mg for several years.I developed tolerance and successfully switched to tramadol 50mg for a few years. Tolerance occurred again and I switched to morphine which I am still currently taking at 12.5mls. The main side effects of all 3 opioids have been constipation and itching. My RLS is so severe that managing these is worth it.I think it would be a huge mistake for you to return to a D.A..
I was prescribed OxyContin 5mg prolonged release tablets (one per day which I take around lunchtime) in May 2022, and have found them to be very helpful. I also take 3 x Pramipexole 0.088mg. When first diagnosed with RLS in 2017 I managed with just one tablet per day, but this had increased to two to three tablets per day by 2022 with no further augmentation since.
In the US, I've been doing fine for 5 years on 10 mg/day of methadone. No buildup of tolerance and sleep more than 8 hours easily. Would never think of taking a DA again. No constipation and not enough itching to complain about.
For sleep I would absolutely recommend medical cannabis - it has been an absolute lifesaver for me. I cannot take any of the recommended drugs and don't want to go down the opiate path due to the high level of addiction. Vaping the cannabis flower calms my body and mind and a much more pleasant drifting off into sleep. My doctor prescribes oils and flower - both work but the flower is instant and quite strong. I have had no addiction problems and next day I feel great.
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