Hi my neurologist has given me the option it trying Rotigotine patches starting at 1mg and increasing to 3mg
I know it’s a dopamine agonists but apparently it’s not as bad for augmentation has Pramipexole which I had an horrible time coming off
What does the forum think?
I do suffer with severe rls and it impacts my life and sleep
I’m 82 years old
Suggestion great fully received
It is highly likely to augment with you as well as the Prami did.Have you had your ferritin checked?
Do you check for triggers?
Good luck.
Why in the world would you want to go bad on a dopamine agonist when you already augmented on pramipexole? It is just as bad for augmentation, it is only that one is less likely to augment on it but that is for someone who has not already augmented. You should switch to gabapentin instead which has no risk of augmentation and is now the first-line treatment for RLS. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment.
Https://mayoclinicproceedings.org/a...
I would only repeat what I suggested last time. Ask for Targinact or Buprenorphine.You had a terrible time on Pramipexole and you will probably augment again on Rotigitone quite quickly.
Your Neurologist won't give you any help getting through withdrawal, I guarantee! She's happy to prescribe it but I know she'll leave you to suffer when you are struggling with 25/7 RLS and trying to reduce the patch.
I know you can't increase pregabalin because of heart issues so discuss Targinact and low dose Buprenorphine and ask the Neurologist to guarantee that she'll help you get safely off Rotigitone if you decide to go down that route.
I presume it's Kirsty Anderson?
Hi, I believe I am suffering augmentation from Targin as the dose has to be increased and it’s no longer effective. I thought this was impossible on opioids?? Every evening I also get severe sweats and sadness.
I have some Norspan patches here to try to get off the Targin and was wondering what side effects did you have and what dose is successful for you?
Many thanks, will be posting a more detailed question here soon.
Sorry to contradict you, but 'having to increase the dose' is usually due to tolerance. Augmentation is very specific and almost exclusively occurs with dopamine agonists.
How long have you been on the Targin? According to results from the opioid registry by dr Winkelman, dose adjustment is quite common mainly in the first year of use. But there are always exceptions.
If you want to switch to Norspan make sure you take an equianalgetic dose, that is a dose of the same painkilling effect. Norspan (buprenorphine) is far stronger than Targin (oxycontin) thus you need a completely different dose. I was on 10mg oxycontin in the evening (and 5-10mg during the day) and am now on a buprenorphine patch of 5 mcg/h. Works well. I do get by on low doses; others need 10-15mcg/h patches. I changes because the oxycontin made me feel weird after having been on it for more than a year. On the buprenorphine I feel more normal again, although kind od drowsy all day.
Contact Shumbah for practical advice on getting buprenorphine in Australia. And please discuss with your doctor.
That’s fine, wasn’t sure of the term used. Have been on it for 5 yrs initially for spinal stenosis, 10/10 am and pm. Then down to 10 mg pm only, now on 15 with no relief at all. Initially no rls for 3 months….best time of my life!!
My patches are same strength 5mcg per hr. Dr has advised cutting targin down to 10mg after 3 days, then a week after that down to 5 with the view to stopping altogether. Would this be a good regime??she’s unsure.
Any initial symptoms to expect and are your symptoms under control now?
Many thanks
15mg once a day would cause mini withdrawals as Oxy only covers 6 to 8 hours.15mg twice a day would be better.
If you have the 5mcg patch you can make a straight swap.
Tapering off Targinact first would give you severe withdrawal RLS.
So make the switch OR increase Targinact to 15mg twice a day.
My other reply deals with nausea, sadness and night sweats.
Read Joolsg's replies. She covers most things. I first switched to syblingual 0.2mg buprenorphine/Temgesic, but got mini withdrawals i the morsig and afternoon )if I took an additional morning dose). Therefore I got switched to the 5mcg/h patch. I had no need to reduce t uur oxycontin before stopping it as it didn't work that well any more anyway.
Am still drowsy on that low dose patch as I was on the low dose buprenorphine pulls and oxycontin. And I have sweats. Not as bad as menopausal ones but still obvious and irritating. But the legs are mostly quite and if any I have only mild symptoms. I do take something (macrogol powder) to combat constipation. Treatments are always a balancing act between effect and side effects, it seems. No free rides.
Thanks so much for your reply. I realise I wasn’t very clear…..my gp suggested cutting down the targin while starting patch at same time.She thinks this is wise as I’ve been on targin for so long?
It’s hard to decide but I think I’ll have to at least try the patch. Hoping the continuous deliverance of medication may be better as feel I can’t go on as I am 🙂
Hi NanPat.As Lotte mentions, opioids cause tolerance but not augmentation. Tramadol is the exception.
What dose are you on and how do you take it? Average effective dose is 30mg taken as 15mg in morning and 15mg at night.
All opioids can cause night sweats and anxiety/ depression and Dr. B suggests adding wellbutrin or trazodone to help the depression.
The sweats will settle slightly but perhaps try a safe non sedating anti histamine like loratedine or clarityn. They help me slightly.
Norspan or Buprenorphine will also cause sweats and anxiety/sadness.
I take 0.2mg subingual pill at 10pm and 0.2mg at 12.30am as it has a long half life and lasts 22/23 hours. If you do switch, try sub lingual pills first and watch for panic attacks and severe nausea. The nausea will settle after 10 days but you may need quells, zofran or cannabis to tide you over.
The anxiety/ panic can be helped by low dose pregabalin for 4 or 5 weeks and then taper off and assess.
Targinact covers RLS for around 6 to 8 hours so if you get any breakthrough RLS during the day or at night, maybe ask for the 5mg pills and take every 6 hours.
Let me know your dose and when you get symptoms.
I stopped Oxycontin because it never gave me full RLS cover. I still had RLS every single night and scored 36/40 on the RLS scale.
Hi, I only take 15 mg at night about 8pm. Rls starts about an hr after usually and I have severe leg pain with it and pace up and down from 9-2am probably 6 nights a week.Neurologist thinks it may now be causing it as it starts after taking targin? No symptoms in daytime.
Why do you think the pills are a better option than the patch?
Would low dose lyrica be 75mg? I’m on that now?
I also thought sr targin lasts close to 12 hrs?
I scored a similar result and evenings are something I dread as they are agonising and depressing.
Thanks for your advice!!!! will post my neurologists views tomorrow
When I can sit still
Oxycontin in targinact was always marketed by the drug company as long lasting and that it covered pain etc for 12 hours. That was a lie and we know Oxycontin only lasts around 6 hours. Just watch the Dopesick series on Disney channel. It's the reason people kept taking more and more, because it stopped covering pain after 6 hours.You should first try getting 24 hour cover to prevent mini withdrawals.
So 15mg once a day won't help.
I suggest you ask for 6 x 5mg pills and take every 4 hours for 2 weeks.
If that doesn't improve the RLS, switch to Buprenorphine.
As Buprenorphine IS long lasting, you only need to take it at night.
The patch gives a constant cover day and night but for SOME it can cause non stop anxiety in the day.
It really is a bit of trial and error.
Some people find the 5mcg patch works well for them, others find the sub lingual.pills at night work better.
Have a chat with your GP. Some will only consider the patch anyway so it may be your only option.
I hope you find a solution. I just wish I'd pushed for Buprenorphine earlier as I spent years suffering unnecessarily.
I second the others. The augmentation rate of rotigotine is not well researched therefore apparently low. Also, with 24h coverage it masks several of the telltale signs of augmentation, symptoms starting earlier in the day and symptoms returning sooner after taking your medicine.
Refuse. The doctor cannot force you to start a treatment, although it is difficult when no valid alternative are offered, like what is probably your situation now. Be adamant and follow Joolsg advice on Targinact, which is well researched for people with refractory RLS. And do mention the buprenorphine/Temgesic, as your doctor may feel better about it than about the oxycontin in Targinact. Mine did.
The patch sounds like a novel treatment. However, it is a dopamine agonist. Personally I have a very dim view of these agents because they caused me to augment and probably worsened my condition. I’d probably avoid it!
Hi Hoochybaby, I would go for it. I am on 0.26 Prolonged Release Mirapex but compliment it with 2 co- dydramol and 0.5 Clonazepam and have been fine for a long time. No problems during the day. Sometimes a bit restless in the evening. But sleep like a log. Gabapentin was no good for me and I don’t want to go on to Buprenorphine. Good luck!
Felicity, you augmented on sinemet, Pramipexole, Ropinirole, and the patch and you also say you started to augment again on the extended release Pramipexole recently, but added 2 low dose opioids, co dydramol to help.You are therefore confirming our advice that all dopamine agonists will eventually lead to augmentation of symptoms.
Your profile says you are against opioids but they do help refractory RLS at low doses and the Massachussetts Opioid study is showing that they are safe & effective. They were the first ever med used successfully for RLS in 1670.
I hope you manage to keep the intensity of your RLS at bay.
Hi Jools, I was actually on Pramiprexole for 11 years and it worked quite well. I was not the only one. Many of us had great benefits from it for many years. It leads to augmentation in the long run but in my opinion much sooner when you increase the dose. My neurologist recommended switching to another DA. Although Ropinerole did not work for me as it gave me sickness, dizziness, headaches and tiredness, the Neupropatch worked really well, particularly in combination.
I only came off DA’s following advice on this forum to go onto Ligands so I tried Gabapentin which everybody was talking about. That gave me 6 months of misery. The combination I have been on now for 2 years of 0.26 mg PR Mirapex, 2 co-dydramol (containing together only 20mg of codeine) plus 0.5 Clonazepam works really well for me. I watch my triggers and never increase the dose. I keep a diary and very seldom have a bad night. I am just trying to weigh up the pros and cons. All I am saying is that Buprenorphine might potentially with some people have more serious side effects in the long run. But thank you and I wish you all the best as well.
I'm pleased you are not currently experiencing augmentation. Long may it continue. At least you know what to do if augmentation hits again. Pregabalin and gabapentin didn't help me at all- Dr. Buchfuhrer believes that is because years on dopamine agonists permanently damages the dopamine receptors and when that happens, only low dose opioids seem to help.
Good luck.
Hi Hoochybaby, I was advised exactly the same by my GP- in desperation when I'd augmented on pramipexole and then I had gone through withdrawal, trying different drugs to try to help. Of course it worked... it's a DA and my brain loved it...for 7 days, then I started to augment! I went off it immediately. DAs are really malicious drugs. They lull you into a sense of false security because they work... FOR A WHILE. Then the hell begins. After several more attempts with other obscure drugs, none of which worked and most made it far worse, I read about buprenorphine here on the forum and believe me it was a lifesaver! I use Norspan patches which seems to be more easily prescribed in Australia than the tablets. I've had two years of very little trouble and when I am in trouble I can usually find that I've been having too many sweets/sugar, or too much of one of my other major triggers like cheese. When I get back on track, my legs settle . Please try to source it from your doctor. there is lots of information here on the forum about it. I Googles some information about it relating to RLS and printed it out for my GP to read. He was marvellous and agreed to try it. Good luck. We all know what you're going through. 
Hi Hoochybaby. My opinion, DO NOT take it. Augmenting on Rotigotine is horrible. It took me 22 months of pure hell to get off of the devil’s medication.
Hello Hoochybaby, I have been on the Neupro Patches (Rotigotine) for quite a few years and they are effective and have not showed any signs of augmentation so far. I am using 2mg patches at the moment but after discussions with Professor Walker I am slowly weaning off them and weaning on to pregabalin so that I eventually take 300 mg. That gets rid of the dopamine agonist problem so I am hoping that it is successful. Just in case it helps, I am also 82 and have had problems with RLS for many years but they now seem to be completely under control except for the occasional day that I cannot find any reason for. In reply to Joolsg I would say that I tried Buprenophine and I was slightly dizzy and unbalanced all day and decided to stop taking it , it was an unpleasant experience that I do not want to have again.
Hi there
I have also tried most of the above mentioned treatments. I either augmented or had adverse reactions.
After sharing several articles and some pleading my family doctor put me on Methadone. We started at a 1 mg a day for a week and worked up to 3 mg. He had an ecg done to make sure my heart was dealing with it well.
I have now been on 3 mg per day for several months and nearly forgotten what my 24 hr per day rls was like. Even took a 9 hr flight without a twinge! After a lifetime of suffering, this is akin to a miracle for me.
I don’t know if everyone gets this result but if you are able I hope you can give it a try.
All the best and hope you get help quickly!
Teresa
Yes Pramipexole is a nightmare and I'm still trying to get off the final 1.6 ug after being on it unmonitored for 22 years and struggling with Augmentation for 3. My consultant is trying to persuade me to use the R patches but I'm afraid I don't trust my GP's capacity to handle a change to any dopamine-agonist. They would throw them at me and I'd be on my own.
I am so sensitive to any change unwilling risk it with having been suicidal during pramipexole withdrawl and no mental health or medical support whatsoever. I am now on gabapentin (300mg x 4) which helps a little but I have to fight to be able to have that prescribed.
My problem is trying to cope with the serious long term issues I have from Covid at the same time as trying to deal with this.
Good luck with whatever you decide to try Hoochybaby. At 82 (I'm 76) we can do without all this medical ignorance!
Thank you all who replied to my query.I think I did my neurologist a bit of a disservice when I last spoke to him ( a locum) by phone he gave me three options
Option1
Increase the codeine to 90 mg at night and consider increasing the Pregabalin to 200 mg at night. My daily Bisoprolol should be taken at the same time so that my heart palpitations would be minimised.
Option 2
To consider Rotigotine patches starting at 1mg released in 24hours and increasing until a dose of 3 or 4mg is reached
Option 3
Consider Ropinirole in the X-LARGE preparation starting at 250 micrograms
Once a day and increasing to 250 microgram increments until a dose of 1mg once a day is reached and then increasing in 1mg increments every week or so. Augmentation is one of the side effects in rls
I think the only sensible option is no 1
At this moment in time I just about get through but lack of sleep due to my legs keeping me awake is making me feel depressed with lack of energy .the only way I keep it at bay is walking about til 3 or 4am but my quality of life is greatly reduced
I must add that I suffer from Atrial Fibrillation and super ventricular tachycardia
I agree that option 1 is the most sensible. As you have atrial fibrillation and tachycardia, opioids can be problematic so you need to discuss fully with your heart doctors as well.
I was on Ropinirole for years. I had severe Rls and developed severe augmentation. I've now had two iron infusions. The gave me Pregabalin to get off the Ropinirole and I still take a 2mg patch. My friend feritin is 200 to 300. I now have very few symptoms of Rls but I need to take the medication religiously.I also can not have caffeine, sugar, alcohol or all the other great things that trigger Rls. Well maybe early in the day.
I can now sit down at night instead of pacing etc.
My advice, get a iron infusion, get off of Ripinirole, live a healthy life style. Working for me. Well 90% of the time and the 10% is not so bad!!
I wish you well
I went through horrible augmentation from it! Pure torture! I would not recommend!
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