Hi from England. I've just been prescribed these patches (2mg) a few days ago by my neurologist. He's told me to stay on my 4mg Requip (Ropinerol) because of the severity of my condition. He stated that he dislikes the term RLS as it seems to downplay the condition and wrote Willis Ekbom disease which is encouraging. He's requested a FBC. He has also discussed with me about using 'intravenous iron' after monitoring the success or failure of the patches. I have another appointment on the 20th Dec to see if I'm managing the patches, struggling with headaches and nausea at the moment. Has anyone experienced the patches and/or intravenous iron? 😊 xxx
Rotigotine Patches: Hi from England. I... - Restless Legs Syn...
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Boofoo71
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I meant infusion not transfusion! Sorry super tired 😫
Are you off the SSRIS?
No 100mg sertraline
Why oh why are you still on ropinirole which is what your patches are after your post 4 years ago and all the advice to get off it especially with the shopping addiction you have on it? And adding a 2 mg patch to your 4 mg requip (also ropinirole) means you are taking 6 mg again and are increasing your dose by 50%. You will never have a good life until you get off ropinirole. Yes it is hard. Yes you will suffer. But there is light at the end of the tunnel. Others have done it and you can too. We are all here to help you and sympathize with you on your journey.
I would cut one of the patches in in quarters and use just one quarter to see if that is enough to control your RLS and if not add another quarter and till you find the amount that controls your RLS. Meanwhile I would ask your doctor for 1 mg patches as you will need them to start your reduction.
Ropinirole is no longer the first-line treatment for RLS, gabapentin or pregabalin is. It used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. To come off ropinirole, reduce by .25 mg every 2 weeks or so. Cut a 1 mg patch in quarters. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount - you can cut the patches into even smaller amounts if needed,. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it. When you have finally stopped using the patch you will need to ask your doctor for .25 mg ropinirole tablets so you can continue your reduction. I assume you are no longer on the slow release. If not you need to switch over since they can't be cut in 2 if needed.
On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)." If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist atHttps://mayoclinicproceedings.org/a...
Do not have an iron infusion until you have your ferritin checked which is the very first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If you have had it tested, what was it? If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice and at that point we would probably advise you to have an iron infusion. Improving your ferritin is essential to helping you with your augmentation and coming off ropinirole.
Ask for trazodone or Wellbutrin which are the only 2 antidepressants that are safe for RLS so you can come off the sertraline which is making your RLS worse. Don't just stop it. You will need to wean off it.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
For the nausea ask for Kytril (Sustol, Granisetron, Sancuso), Anzemet (Dolasetron) or Zofran (ondansetron)
Ive just read my post 4 years ago.... I didn't listen. I guess I didnt believe that anyone would know more than a neurologist. For that I apologise. Now I'm back again and want the help and information to get my life back.
Stunned at the medication you have been given .....PLEASE LISTEN TO THE ADVICE on here ...I'd also be filing a yellow card complaint for the mismanagement of medication, this is very,very dangerous
How are you doing? RLS free yet? You must be getting very close.
That made me laugh!!! One tremor and twitch at a time my friend. 😅😅💕
The volumes down ...for now !!!!
⁸I don't normally say this, but PLEASE name this man. This is DANGEROUS AND NEGLIGENT.You are suffering drug induced worsening of the disease, caused by Ropinirole. To add Ropinirole in patch form, putting you on a criminally high dose is nothing short of criminal.
There have been several successful legal cases against UK doctors for prescribing these drugs, especially if Impulse Control Disorder happens ( gambling, over spending. Shopping addiction etc).
Your RLS will become SO severe, you will want to throw yourself out of a window.
Please, please, please ignore his advice, send him a complaint, and follow the advice of the experts via the Mayo Clinic Algorithm.
Consult a legal firm because this neurologist should know that Shopping addiction is a HUGE red flag and these drugs have caused it.
You have to get off Ropinirole slowly by reducing 0.25mg every 2 weeks.
Follow the advice you've received on here.
Your neurologist has done you an enormous disservice.
Do NOT START the patches. Return them to the pharmacy.
I came off Ropinerol and tried pramipexol which I reacted badly too a few years ago so I was told to back on Ropinerol. However, withdrawing completely from Ropinerol was horrific which led to an overdose of oramorph and a few tramadol. I just needed to sleep. The intention was not to hurt myself, and it wasnt done on purpose, it was days of moving constantly, my arms, my legs day and night, I just needed to sleep. I'm really scared to do it again.
Yes. Withdrawal is hellish. But staying on Ropinirole and increasing it or adding Pramipexole/Rotigitone will be far more hellish.You could be RLS free, night and day if you take control and get off this poisoj.
These drugs over excite the D1 receptors and they literally scream out for a hit of dopamine. That drives the worsening of RLS.
It happened to me and I had RLS in my arms, hands, shoulders, face. I couldn't sit through a cinema performance.
Withdrawal is tough. But many of us in our 60s and 70s have managed it.
You will have SEVERE all over RLS while reducing, but follow the guidelines on here and you can do it.
Go slowly.
0.25mg every 2 weeks.
Do NOT take more opioid than necessary. So just one 50mg tramadol a night for 2 or 3 nights after each dose reduction.
When you are 4 weeks from dropping the last dose, you start taking pregabalin. Start with 75mg and add 25mg every few days until 150mg. Stay on that until one month after the last dose of Ropinirole.
The pregabalin should then work. If it doesn't, add 25mg every few days up to 250/300mg.
The 2 weeks after you stop Ropinirole will be hell on earth. No sleep for 4/5 days and severe RLS.
BUT it DOES settle.
Then you get your life back.
Honestly, it is worth it.
I did it in 2016 after listening to the advice on here.
Pregabalin and iron infusions didn't help me and it took me a few years to find Buprenorphine.
I now have ZERO RLS ever. I sleep 8 hours.
Please watch the videos by Dr Earley and read the articles by Dr Winkelman on augmentation. Dr Earley is a top RLS expert, seeing thousands of RLS patients yearly, whereas your neurologist will see around 10 a year. Dr Earley makes it clear EVERYONE on these drugs will see their RLS worsen.
You will NEVER get relief from your RLS by listening to this dreadful neurologist. I guarantee it. Your RLS will just become more severe until you will end up suicidal.
Please try again. Slowly.
If you struggle with each reduction, consider buying cannabis from the private, medical cannabis clinics or using kratom. It's illegal here in the UK, buy can be bought from
kraatje.eu
They ship to England as Moringa herbal tea.
And please do message me the name of your neurologist as he really needs to update his knowledge.
sleepreviewmag.com/sleep-tr...
hopkinsmedicine.org/profile...
Thank you so much for your advice. You just assume that a Consultant Neurologist knows what he's talking about. This has been a huge learning curve. Certainly some pretty comprehensive information needs to be digested. I wasn't questioning anyones knowledge or experience, I just find it hard to believe why I would be given this course of treatment if it's not safe or helpful.
Simple. RLS isn't taught at ANY stage in the medical curriculum. RLS-UK campaigned to get it taught to GPs, but RCGPs rejected the plea, saying doctors would know how to research and prescribe. Utter rubbish, most have zero knowledge and don't have the time to research it during a 10 minute appointment.
The ABN confirmed it's not taught during neurological training either.
It is scandalous AND shocking.
RLS UK are desperately trying to get it taught effectively, but no one is listening.
Once you realise that you know far more than your neurologist, you can insist he helps you get off these drugs.
4 years ago I recommended you read 'The Clinical Management of RLS' second edition by Drs Buchfuhrer, Allen, Hening & Lee. You can buy it second hand on Amazon.
Now there's the Mayo Clinic Algorithm and some excellent websites run by US doctors who know what they're talking about.
mayoclinicproceedings.org/a...
There are a handful of UK neurologists/doctors who do know more than the basics.
Prof. Walker at Queen Sq, Dr Jose Thomas at Gwent Sleep Clinic, Dr Robin Fackrell in Bath.
You may want to see one of them to get help reducing the Ropinirole.
I've been on 0.4mg Buprenorphine for over 2 years and it has completely transformed my life.
That's why I get so angry about the medical ignorance still out there.
Per Joolsg, definitely order some red strain kratom powder from the site she mentioned. When all else fails, it will get you through the night as it takes RLS away in minutes. There is no need for you to suffer while getting through this phase. Best of luck!
Why oh why is R,L,S not out there being studied ,so as to get a fix,who ever finds a cure is going to be the most loved person in the world,I have been a sufferer of R,L,S since I was about 25,I am now 76,it has got worse and worse ,so many medications ,all of them haveing to give them a try,but no, none helped,and being told you can’t take a sleeping pill,or a sleeping aid of any sort,it’s just a nightmare,
I am going nuts,it sounds as if we all are just willing to try anything,,yes,just anything,I am on Buprenorphine now,last resort,some times it has helped,but maybe it’s cos I am so exsausted I will get a few hours sleep,nowhere enough to catch up,I am really at my whitts end, like many of us here,who can talk on this forum,they do not know what to do,I have really and truly had enough,many,many many people who know me ,just can understand,or believe what is going ,you try and tell them you have not slept for 3 days,but still on my feet,I say to them,because there is no choice,you can not lie down,you can sit ,you lean against the kitchen counter,for support,to hold you up,for hours and hours,,I seem to others,OK,but realy I want scream,and more screaming,,there is nowhere to go to help,tried hospital emergency twice,but it realy is pointlees,after hours of waiting,moveing arround in the chair,looking as if your haveing some sort of fit,then finnaly a doctor you get to see,tell them your story,and you get the same answer,” sorry,there is nothing they can do
I'm obviously still awake and have been all night. I've been reading a lot of the articles and I have to say I am floored that even repeating to the neurologist that I struggle with compulsion to spend he would still prescribe me the same drug in a different format. I have wasted thousands and thousands of pounds on things I never needed just to fill that feeling it gives me when I've purchased items online, and whats more embarrassing, is that half the stuff I never used and didn't even open straight away, just left as the thrill of the purchase had gone. I have a clinic letter that a private neurologist stated about the drug and asked my husband to keep an eye on me. Ive just got all my correspondence out at 2am this morning.
Utterly shockingThe UK legal cases are clear. The previous neurologist warned you, so he can't be liable, but this new neurologist is supposed to warn you about the risk of drug induced worsening ( augmentation) and Impulse Control Disorder.
The fact that you clearly have BOTH is obvious to everyone on here.
He is supposed to be a highly trained neurologist. He hasn't even mastered the basics.
Look through all the websites and articles on augmentation. They all ask the same questions.
1. Has your RLS become more severe?
2. Have you had to increase the dose?
3. Does your RLS start earlier in the evening or afternoon?
4. Has your RLS moved to other body parts ( arms, hands, shoulders, back).
It is so clear that you should have been told to reduce Ropinirole.
The ONLY good point this neurologist made was about an iron infusion.
Iron treatment by pills/infusions is now the FIRST treatment, and replacing trigger meds like anti depressants.
If you and your son had been treated with iron first and advised to switch from anti depressants to trazodone, you would both be RLS free probably.
The majority of patients improve with iron.
Pregnancy depletes our iron stores and we can pass on those low iron stores to our children. Many children with ADHD actually have RLS and have been incorrectly diagnosed.
It is early days for you.
There is a LOT to take in.
It took me ages to get over the shock of realising my doctors knew zero about the disease.
Recently, RLS UK approached Bart's Hospital about RLS teaching and a medical student agreed to do her dissertation on RLS. She interviewed 6 RLS patients and 6 GP training tutors. The tutors teach all those medical students who decide to become GPs.
Not ONE of those tutors knew about RLS. They thought it was rare ( it affects 1 million in the UK) and they thought you could treat it with Quinine.
We have an uphill battle.
NHS and NICE guidance are outdated and STILL have dopamine agonists as first line treatment.
RLSUK is trying to change that. But it's a tiny charity with no funding, run entirely by patients with RLS.
Learn all you can. Dr Andy Berkowski's site is excellent.
Any article or video by Dr Winkelman, Buchfuhrer, Earley, Ondo, Berkowski will be very educational.
They all raise awareness of the scale of augmentation. Nearly every person taking these drugs WILL get worse.
But, you now know what your solution is.
Slow and steady. Within 6 months you will be off Ropinirole and will hopefully have had an iron infusion and be on meds that work.
It can take a while to find the right meds.
Many do very well on gabapentin or pregabalin. Others on Oxycontin.
Or a combination of the two.
Methadone and Buprenorphine are the favoured opioids in the USA and are highly effective at low dose. In the UK, doctors instantly caution about addiction. But Dr Winkelman has a study which proves we do NOT become addicted ( unless there's a history of drug abuse) or tolerant. We stay on the same low dose for decades and usually do not increase the dose.
There is always someone on here to point you in the right direction.
If you need any research studies to show to your lawyers or GP, just ask.
This is the start of your recovery.
Knowledge is power.
The patches are called Rotigotine not Ropinirole. Is this the same?
I certainly have a worrying impulse situation, which has created serious debt
My neurologist did ask about the compulsion and just made a note. This was on my last clinic letter but I've moved location since then
Here are the legal cases about Pramipexole, a similar drug.This neurologist made a note but kept you on Ropinirole? That's negligence.
As you have lost money through no fault of your own, you definitely have a legal case against the previous neurologist AND this one who has prescribed MORE of the drug that caused Impulse Control Disorder.
Yes - it is just ropinirole in patch form.
This is what google states. I'm super confused now......Rotigotine and ropinirole are used in the treatment of Parkinson's disease (PD). However, receptor binding profiles of the drugs are somewhat different. Rotigotine binds to both D1- and D2-like receptors, whereas ropinirole selectively binds to D2-like receptors.1 Because selective D1 receptor agonists reportedly enhance cholinergic neuronal transmission and improve cognitive function—in contrast to D2 agonists, which induce the opposite effect—we hypothesized that rotigotine would enhance cholinergic transmission.2-4 To our knowledge, there has been no study comparing the effect of these drugs on cholinergic neural transmission in vivo. The present study aimed to examine whether rotigotine and ropinirole have different effects on cholinergic transmission in the mouse medial prefrontal cortex (mPFC).
The source being NIH national library of medicine. Obviously I realise its google and not always to be believed
Nevertheless they are basically the same and act on your RLS the same way and both cause augmentation.
Thank you Sue 😊
They both cause augmentation. That's the bottom line. Think back to before you started Ropinirole.That's your base level.
You can get back to that.
Then iron infusions would settle your RLS most likely
Yes thats a good point. To think back to the start, which seems a lifetime ago. All I can remember thinking is that I wished I'd had medication earlier. My son is on a very low dose of Ropinerol too. 0.00 something. His GP put him on it about 6 months ago. He lives in a different area. This is very concerning
Please get your son off Ropinirole.He's young.
He should have been given iron pills/iron infusion as his first treatment and weaned off any anti depressants which trigger/worsen RLS.
Ok so its 1am and my mind has been racing! I've never felt so uncertain and concerned especially for my son. I'll cope with anything but the thought of anything affecting my children is very worrying. I've been reading what you've sent me and I'll be honest, the thought of listening to random strangers on a forum instead of a Consultant Neurology Surgeon would never have ever been a thing but I am now seriously questioning my treatment plan! At this moment in time, because of my uncertainty I've removed my patch. I just find is so hard to comprehend that if this is true, and from what I've read so far, its looking true is allowed to continue and I am doing myself and my son harm rather than good. I'm mortified as a mother who adores her children even encouraged my 25 year old son to seek medical attention for his RLS! You just want to believe the medical profession. I appreciate the advice I've been given, I'm just trying to digest and process it all. This new information has blown me away!!
Ok so firstly I will ask my GP to issue 0.25mg at the moment one tablet is 4mg slow release. Well actually firstly I need to talk to my son? He is on the lowest dose, will he need maybe do day on day off until he's free of it? Now back to me....so reducing (wow, I'm nervous) it was only my second day with the patch. Which is now removed. When should I start to go down to 3.5mg? By the way, you do realise I'm trusting strangers on a forum. As an intelligent woman this seems bizarre, but the more I have read the more convinced I am. Also the articles have been a real insight to my condition. I wonder why I decided to go back to the forum after all these years. Fate? Faith? Who knows. Nevertheless I'm listening to you and another lady who has helped. I'd like to reduce with the help of the forum if thats ok?
Boofoo have you looked on the rls-uk.org website ? It tells you about alot of what you have been advised about augmentation etc on there .GPs can't argue with that it's a reputable recognised source of information and he/she will listen to that better than a forum they won't know about. No.i wouldn't do day on /,day off he needs to follow what you are doing and reduce very slowly.
If you can get your GP to prescrbe Tramadol which is a strong painkiller (it works on the urge to move as well as pain ).that would help with the withdrawal.
If you aren't working tomorrow I would spend the day reading up and coming on here as questions come into your head .
On the rls-uk.org website there's a section for Professionals and the augmentation video would be good for your GP to watch .
I hope your GP is one who will work with you .
Pipps x
I don't work now. I've been a retired disabled Army veteran since the young age of 26 now 52 after a major incident on tour. As the years have gone by, my left side, arm, shoulder and neck have got so weak with muscle wastage and nerve damage and PTSD I struggle to work. However, I'm grateful and I'm certainly not a 'woe me' as unfortunately there're a lot worse than me out there.
Boofoo I am sorry to hear that .You have a new 'job ' now researching your socks off lol
Absolutely....and a full time job it will be. I've decided to get up as my head is full and will try and sleep later. Just journalling all the helpful tips on how to move forward. My husbands more sceptical of my decision as he's seen me at my worst, however I have to put my trust in the people who know more about this awful condition, the ones who have suffered through it and have been successful. Its hard to imagine doing it another way than Ropinerol. However, my journeys starts today. Day one: Remove patch (only been on for under 48 hours) Make a GP appointment to discuss antidepressants. I'm assuming change SSRI and get used to the new script first? Then change slow release Requip to 3.75mg in a 3mg and 0.25mg dose? Ooh my body better hold on tight, this feels like a pending rough ride!
You can definitely trust Sue and Joolsg. Please, it is vital that you get off the ropinerole and rotigotine. You will be supported every step of the way. It will not be easy but you will be so thankful eventually.
Genuinely LOVE and best wishes 🤗
Thank you it feels weird to trust strangers rather than the professionals who are supposed to know what there are doing. Its frightening that this is still happening. I cant believe they've made me worse and not better. Thank you for your input its very much appreciated. 😊
Boo, you have only one path forward. It begins with tapering off the SSRI (and any HRT you may be on) before reducing the patch. And if need be switching over to Trazodone - 50 mg at night would be my recommendation. Now for the good news. The SSRIs only worsen the symptoms of RLS, they do not down-regulate the D2 receptors and to the contrary may actually up-regulate. They do this because they antagonize dopamine/block the D2 receptors. When you block these receptors they grow big and strong. Since you’ve been on the SSRIs the whole time you were on DAs, I believe (note the “I”) you will have an easier time getting off them than someone who wasn’t. Remember, first the SSRI, then the DAs.
Ok great thanks I did forget about the Sertraline being a factor. I'm writing it down now. I'm jotting notes down (a lot of info). I'm pretty embarrassed that I never thought once to question a medical professional!
Here’s a little support/quote for what I claim:
“Also at 72 h after the single dose of mianserin a significant increase in the density of dopamine D2 receptors was observed. Repeated imipramine, amitriptyline and mianserin increased the affinity for dopamine D2 receptors in the striatum and in the limbic forebrain. Repeated fluoxetine increased that affinity in the striatum, but decreased it in the limbic forebrain. The density of dopamine D2 receptors was increased by the repeated administration of the antidepressants studied in the limbic forebrain, but was not changed in the striatum. The results obtained in the present study are in good agreement with the previously reported enhancement of behavioural responsiveness to dopamine and dopamine stimulants (dopamine D2 up-regulation) evoked by repeated treatment with antidepressants.”
pubmed.ncbi.nlm.nih.gov/881...
This too: link.springer.com/article/1...
Im on Nortriptaline, (probably spelt wrong) for sleep. Is this ok?
It’s terrible for symptoms of RLS, but quite possibly very good for building up the receptors as I mentioned before. No wonder you needed so much of the DA. Without the DA your RLS would have been the devil incarnate. Maybe the connection would have been made, maybe not. When I was about 40 I started to take melatonin (.5mg) and I would contort my body like a snake. Before that my RLS was mild and intermittent and I’m not even sure I knew its name. After 2 or 3 nights of little to no sleep I went on the internet and saw the following quote on an RLS website “just take some iron at night, there’s just something about that free floating iron that works.” I bought Gentle Iron (aka ferrous bisglycinate) because of a sensitive gut. It worked that first night. Fast forward 3 months and I run out one night. I go to the drugstore and buy the kind they had there called ferrous sulfate. I figured I’d rather be constipated than sleepless. I took one and an hour later go to bed. The RLS was still there. I take a second one and eventually fall asleep but I never ran out again. The ferrous bisglycinate is much more bioavailable than the sulfate and works quick to relieve RLS. When I increased the melatonin to 1.0mg I had to increase the iron as well. I still didn’t make the connection between RLS and melatonin. Stupid me. At some point I thought it was all so crazy so I went back on the internet and found out how bad melatonin is for the symptoms of RLS. The day I stopped the melatonin my RLS went silent and no need for extra iron. My RLS was really silent. I believe the melatonin up-regulated my receptors, albeit temporarily. I believe melatonin, 5htp, SSRIs and tricyclics all tend to up-regulate the dopamine receptors, however painful it is in the process.
I think once you’re off the SSRI and the Tricyclic you will find the DA is more effective without those two counterweights and you will be poised to start reducing.
I’m not sure about going from the patch to the pills. I wouldn’t make that switch I would just drawn down on the patch As you read, the patch is kinder to our d1 receptors and is the only da that “agonists” this receptor. There’s a yin/Yang relationship between our D1 and D2s. The D2s give off a quieting signal while the D1s give off an excitatory signal. The D1s might equally contribute to the withdrawal effect because DAs tend to not only downregulate our quieting D2, but they also up-regulate the noisy D1s. The patch is the only one that down-regulates (or has a tendency to) the D1s by “agonizing” them. Yes, that’s right, we want to agonize the D1s and antagonize the D2s in order to get back to baseline. So you’ve been antagonizing the D2s with the SSRI and the tricyclic, but now it’s time to stop. And the patch may somewhat agonize the D1s which is a good thing, but you still want to draw down on it.
Thank you.... I had no idea it was so complex.
Nortryptiline is a tricyclical anti depressant. ALL anti depressants trigger/worsen RLS.It's all on the RLSUK website, and it a shame GPs and neurologists don't learn the basics of the disease.
Sedating anti histamines are the other main culprit.Anything that makes you drowsy for sleep worsens RLS.
Wow ok never knew that. So Jools I removed my patch as it had only been a short time (2nd patch less then 13 hours) I've tried absorb as much info as I can and obviously will continue to learn more. This has been a pretty scary wake-up call and a leap of faith. My appointment with the neurologist was at The Spire with a follow up appointment on the 20th December. I have an appointment with my GP this Friday.
Here are my meds:
4mg Requip slow release. 50mg Sinemet (2 tabs if and when required) when i needed a boost if my body was really bad, neurologist prescribed 5 years ago. 100mg Sertraline daily.
25mg Nortriptyline (2 nightly)
Plus now 2mg Rotigotine patch
I'm sorry if through all the responses I've missed this, but where do I start??? What do I do first? What do I say? How can I tell a medical practitioner that my neurologist is wrong and that this forum knows best (of which, I now believe, you all do) 🤔💕
Here is someone who fairly recently stopped Sertraline. healthunlocked.com/rlsuk/po...
One step at a time. Don’t even think about the DA or withdrawal, which like I said before, I don’t think will be as bad for you. Work with your doc on a taper schedule for both anti-depressants and onto trazodone. Actually, I would think he would immediately allow you to switch out the nortryptaline for the trazodone, without need to taper? They’re very similar, only Trazodone doesn’t provoke symptoms. Then as you taper the sertraline he may want you to add in a daytime dose of the trazodone, or not. I think you will be shocked at how much better your RLS will be as you do this.
Ah ok thank you. I've flagged lots of info for my GP I hope she's sitting comfortably.
Print off the Mayo ClinicAlgorithm.Show your GP the NHS and NICE guidance on RLS.
nhs.uk/conditions/restless-...
The NHS link talks about replacing medications that TRIGGER RLS.
But doesn't list them. So refer to RLSUK website which DOES list trigger meds.
cks.nice.org.uk/topics/rest...
The NICE guidance does state that treatment should be either dopamine agonists OR pregabalin/ gabapentin.
It also talks about augmentation and Impulse Control Disorder and makes it clear that if you have ICD, move the patient OFF dopamine agonists.
So your GP may not want to accept the US Mayo Clinic Algorithm as evidence, but he has to listen to NHS and NICE guidance, both of which mention trigger meds, augmentation and Impulse Control Disorder. Clearly your neurologist hasn't read either. Explain about your compulsive shopping.
The NHS and NICE articles state that it's rare - IT ISN'T!
No one reports it as a side effect!
You should NOW report ICD and AUGMENTATION under the Yellow Card Reporting Scheme. Unless we all report what is happening, the medical profession refuse to believe the scale of the problem.
Here is the link.
bnf.nice.org.uk/medicines-g...
Book a 20 minute GP appointment, make bullet points and ask your GP to look at the RLSUK website, the Mayo Clinic Algorithm and the NHS and NICE guidelines.
Explain that you intend to reduce the Ropinirole slowly by 0.25 mg every 2 weeks. So you need a prescription for 3mg Ropinirole and 4 x 0.25mg pills.
Do NOT take the Sinemet EVER. Return now to pharmacy to reduce temptation to take it when desperate. Return the Rotigitone patch to the pharmacy.
Explain to your GP that withdrawal is BRUTAL and you will need help.
Ask for 30mg codeine or 50mg tramadol to take at each drop in Ropinirole dose.
Also ask for trazodone to replace the sertraline and Nortryptiline. I suggest you do one withdrawal/replacement at a time. So drop sertraline and Nortryptiline first by replacement with trazodone.
Although it is illegal in the UK, kratom powder, 1 teaspoon in hot water and diluted with orange juice, will reduce the increased RLS at each reduction of Ropinirole. However, it can become addictive, so you would have to be strict and only take it for a few nights at each dose drop. Buy it DOES help.I used it in 2016, when it was legal.
It can be bought at
And is sent discreetly as Moringa herbal tea. Ask for Red vein borneo.
Ask your husband/ son/ friend to accompany you to the appointment. Do NOT be intimidated. At this point, you know more than your GP, so be firm.
You can do this.
It is a tricyclic anti-depressant. Also bad for RLS. There are only 2 anti-depressants that are safe for RLS which I mentioned above. If you need something to sleep trazodone which I mentioned for depression helps. Otherwise ask for zopiclone.
Hi Boofoo I can imagine you have alot to think about ! I was in a similar situation to you many years ago and my GP and Neurologist kept wanting to keep upping my dose of Pramipexole and then Ropinerole and I was getting worse spreading into my arms tbh I was getting suicidal by the time I found this site .I realised eventually it was augmentation and very very slowly reduced my dosage and started on Pregablin, Tramadol and iron .It wasn't easy but it was worth it .If you put augmentation into the search you will see all the posts of members who are affected by it .Sue and Jools have researched RLS extensively and have a shed load of information I have done my own too I even emailed a Specialist in America and he sent me lots of information which I gave to my GP.
If you look on the Pinned posts there's information about Augmentation.
A member Snoops 112233 recently won her compensation against her health authority for the compulsive behaviour the medication caused .If you scroll down the posts you can see it -it's 20 days ago I think -sorry I can't do links I am a technophobe lol
My daughter has inherited RLS from me but it's only occasionally just now so I understand how you feel about your son but this is the fault of lack of training for doctors about RLS and refusal of many of them to do their research. It's an appalling situation!
Try not to panic stress won't help take things day by day and learn as much as you can .If you can get hold of some Cocodamol over the counter although it's only a teeny bit of Codeine it's better than nothing and you're allowed to take 2 at a time
I would definitely see a solicitor you have a good case .Good luck
Pipps x
Thanks Pippin...it has been an overload and I'm still awake at 2am. Thank you for telling me about your daughter. My children are my world and I'm more choked about my son. I will certainly contact a solicitor. I still struggle to get my head around the medical profession. I'm so glad I decided to post
Boofoo the slow release Ropinerole can't be cut into smaller doses so you will need the ordinary ones not slow release .You will start by going from 4mg to 3.75 mg so your GP will need to prescrbe some 3mg and some 25mg to start you off Yes I am in England it's late I got absorbed in a good book .!
Ah ok I didn't know that thank you. Another jot in my notebook. I love reading too Pipps. Anything to distract I guess
Many of the very knowledge members on here started off with their first post in the position you're in .It really is horrendous my Neurologist wanted to put me on 12mg of Ropinerole! Right sleep time for me now .You'll be ok we've all got you x
I agree with Pippins2. You need to change from the slow release to the regular one.
Also don't take Sinemet. It is not technically a dopamine agonist bit acts as one. You don't need to add to what you are already taking.
Yes I'll do that in the first instance. Just to be clear, am I asking just about my Ropinerol?, or can I also ask about the alternative meds for my PTSD and Sleep that Jools told me about at the same time? Or just one drug at a time? I'm just slightly unsure of the order. Sorry if this has already been mentioned, as I'm trying to look back on previous messages and there's alot
I didn't see what she recommended for PTSD. You can certainly take something for sleep without waiting but discuss this with your doctor as I don't know all the medicines you are taking. And if you get trazodone, it helps with insomnia so you might want to wait to see if that is sufficient first.
Ok will do. Jools has mentioned alternative medications so I will discuss it with my GP on Friday
Lemon balm is brilliant for sleep, you rub it on pressure points eg. Wrists, behind ears, and especially the soles of your feet (soaks in best). I’d like to recommend a lady called Sarah, her company is called Blessed Beez and she’s based in the UK. You’ll find her by searching on Facebook. The balms and bars are fantastic and all 100% natural. There’s a balm for everything. My nana has rheumatoid arthritis in her hands so after reading the success people have had, I bought her the Nettle balm, she’s even coming off painkillers. I am currently using an instant anxiety relief balm, people have tapered off ssris using this. I’m on 200mg sertraline daily and am slowly wanting to get rid. There’s hair balms (people have had hair grow back, they can also replace face creams, soap and deodorant so no more nasty chemicals getting into your body. There’s balms for menopause, sleep, anti aging face balms, Apple mint balm for fungal nail infections, Lemon balm also targets RLS by rubbing into legs and feet, Daisy bump gets rid of eye bags and heals any cut, burn or bruise. There is also tea bags that detox you, stop IBS. The list goes on and on.
Anyway I’m so glad I found this lady’s products and I wanted to share this with everyone in need.
Ps; a small pot of balm is £5 and goes a long way! Much love
Thank you for that 😊 I'm happy to try anything that helps. Its much appreciated xx
Pippins saved my life 7 years ago. I was you. I came on this site desperate for help as I was suffering constant RLS on 4mg Ropinirole.Pippins, Madlegs and Elisse all told me about augmentation and suggested I email Dr Buchfuhrer, a top US expert. He instantly emails back. The man is a saint.
I followed the advice of Pippins and others, despite my doctor's ignorance.
I've spent the last 5 years reading research papers.
So, Pipps is right.
Thanks Pippins for helping so many people get off these drugs.
Oh Joolsg now you have me crying with your words ! but it was very much a joint effort I have now handed over the reins (lots of personal stuff going on ( but occasionally a post like Boofoo's brings me out of RLS retirement LOL
Well it's true. My GP at the time was appalling and there was a 10 month wait to see Prof. Chaudhuri.Thankfully, you were there and I listened to you and Elisse and Madlegs and I wrote to Dr Buchfuhrer.
I am in such a good place now.
Thankyou
❤️
Now you'll be doing the same for me! My life has been turned upside-down. The money, the depression, the moods, the sleep, not sleeping in the same bed because of this. I separated from my husband 2 years ago, we are still trying. This will not only help me, but my marriage from a guy who has been so supportive emotionally and financially. I've told him about this forum and he came to see me. He too now understands about ICD and Augmentation. I cried so much! Probably too much sharing, but the thought of this potentially ending, I can't put into words what this will mean to me.
Boofoo, I am so sorry to read this. But can relate. Uncontrolled RLS and its effect put a strain on my marriage too. I hope your RLS and your relation soon gets better ❤️🩹
I'm so glad you came back to the forum. There are tens of thousands of RLS patients in the UK currently experiencing augmentation. It is a ticking time bomb and doctors are totally ignorant.RLS puts an enormous strain on marriages. The lack of sleep, the all over body anxiety, and in your case ICD.
You will get your life back and you will get off Ropinirole.
Your RLS will be far less severe and yoi will be able to sit through long car journeys/cinema etc again.
Stay strong and everyone will help you through it.
I'm so pleased your husband now understands what has been happening to you.
Xx
Update.. .Hi Jools and RLS supporters 💕 so I went to my gp on Friday and it was a registrar GP. She was looking at me with a huge amount of scepticism when I mentioned I'm ignoring my neurologist and listening to strangers , understandably! I did state "I know what you're thinking, as I felt the same way". She wanted to talk to my GP before doing anything with my medication. She did assure me that she would look on the forum and pass on the website to my GP, which is great. My question is, can they refuse to change my medication from slow release Requip to daily? So I can start to reduce. I'll be honest, it was a very uncomfortable appointment questioning a medical professionals expertise🤔 xx
Well done! I do recognise t he feeling. I always feel I need to downplay my knowledge and acknowledge clearly the knowledge and experience (which is different from mine, of course) of the doctor at hand.
I do hope you not only referred to the forum, but also to more 'credible' sites like rls-uk.org and the Mayo Clinic updated algorithm. And of course I hope they credit your request; they should! They can't force treatment on you that you don't want.
Well done.I very much doubt they can refuse to change the script from slow release to normal Ropinirole.
Any decent Doctor who actually looks up Impulse Control Disorder and augmentation will see instantly that you are experiencing both and have to get off dopamine agonists. I suggest you write to your GP, saying you are considering consulting a lawyer about the failure of your doctors to advise on impulse control disorder and augmentation. Then your GP may actually read up on RLS.
I have written to Switalskis solicitors in York to see if they will consider a UK group legal action.That is the firm Snoops used recently to sue her doctors for prescribing dopamine agonists and failing to help her when she developed Impulse Control Disorder.
She used Kimberley Bradfield in the York office.
It may be worth you showing your GP the UK legal cases about Ropinirole and Pramipexole and compulsive spending /ICD. Perhaps if your medical team know you are taking legal advice, they will actually bother to get off their high horses and read some research on augmentation and Impulse Control Disorder. After all, the president of the Royal College of General Practitioners made clear that no training on RLS was required. GPs would apparently know how to research the condition!
But do call Switalskis in York to speak to Kimberley Bradfield and discuss the Impulse Control Disorder AND the incorrect advice you have received from the neurologist and your GP.
Legal cases and Switalskis contacts set out below.
Do also report the ICD and Augmentation via the Yellow Card Scheme. Unless we ALL report these serious side effects, doctors will think they are not happening. Neurologists look up adverse side effects and if no one reports them, the MHRA and medical profession will keep prescribing Ropinirole and Pramipexole.
neurologyacademy.org/parkin...
Thanks once again Jools and Lotte. Snoop is privately messaging me and we are speaking this week. She has been a huge help also. I am getting through all the info and advice little by little, I have to say that this situation has knocked me for six. I feel so strongly about this situation but so weak to take on the medical profession. I know its pretty popular in the USA to group claim, (loved the movie, Erin Brockovich). I wasnt aware it was a thing in the UK. I'm still concentrating, in the first intance, on getting my script changed and getting off this drug.
Totally understand. And that should be your priority for the next few months. Keep a note of everything. Every letter. Every appointment..Write down what GP says.
Video yourself going through the withdrawal. Keep a diary of your symptoms and feelings.
When you're through withdrawal, then you can think about legal action.
Class actions don't exist here, but there are similar multi action claims.
Boo, are you first going to do something about the Sertraline and tricyclic? Here’s a reply from Flute:
“Getting off of sertraline was a game changer for me. My RLS symptoms were lessened greatly. Still have to keep my iron levels up along with watching my diet, exercise, and drinking a ton of water (of course, all that helps your overall well-being)…sex helps too.”
Flute went from Sertraline to Wellbutrin straight away. And I assume you can go from the Nortriptaline to Trazodone straight away as well. Flute is still on very low dose Prami and even after 10 years is not in augmentation though she’s sure it’s coming down the road for her. She was on the Sertraline for 15 years.
Like I said before, I think making the above changes will greatly reduce your RLS and make tapering off the DA much easier. I truly believe (note the “I”) that the sertraline acts as a counter weight to the DA stopping your dopamine receptors from being down-regulated anywhere near as much as someone who wasn’t on it.
So, the tapering shouldn’t begin until you’ve switched out the Anti-Ds. AND, you should have a HIGHLY detailed plan with your doctors for a smooth transition, which should include a combination of either Gabapentin or Pregabalin with an opiate. Buprenorphine or Methadone should also be waiting in the wings for you, even before you begin the taper. Back up plan, upon back up plan, upon…is the name of the game. Slow and steady wins the race. RestlessGuy took 9 months to get off the DA. Why not? The point is to be comfortable not speedy. If the doctors refuse the Buprenorphine then hold on to those patches. Those patches are Plan C in case the GABA and opiate aren’t enough and you’re refused the Bup, which I have a feeling you won’t be once you make them realize how much they screwed up 👿. You add in a 1 or 2mg patch and start the taper process over again. I hope you realize now that this is all so doable, including the lawsuit, which I think should not commence until all is said and done with your health and you have new doctors on board willing to continuously treat your RLS the right way.
Thanks Desert 🏜 I thought I would have to come off each gradually. I have the drug change next to each of the drugs I'm on, in my diary, so I can keep a record. Its seems all my meds mess with my RLS. I will speak to my GP, I gave an appointment with my usual doctor on Monday. Thanks for the help 🙂 xx
This is the path of least resistance and has stood the test of time. Not only for us on here, but also for Dr. B, a well-known RLS expert. Least resistance meaning least withdrawal symptoms. I have doubts about just how terrible your withdrawal will be, due to the Sertraline. I think most on here don’t have an opiate, much less Bup, waiting in the wings. They get by on either Gabapentin or Pregabalin and will have little sleep that first week or so once off the DA.
The most recent case of this is Hublot who stopped the DA somewhat quickly, (like silly quick) and used only Gabapentin, eventually switching to Pregabalin. Her final saving grace was the iron at night trick. Worth reading through all of the replies and even checking out Hublot’s earlier posts from 4 months ago.
healthunlocked.com/rlsuk/po...
Here are relevant comments:
Hublot, 27 days ago - Taken the iron for 2 nights and I do feel better, I’m on 150mg Pragabalin I long should I waite before I try and decrease it. Hublot
Hidden, 27 days ago - Wow!!!! You try immediately. By 50mg. If you feel any RLS in bed you get up and take that other 50mg. This is a no suffering zone. Then wait a few more weeks to try again. The few more weeks is NOT so much to raise ferritin as to give your dopamine receptors more time to return to baseline, post DA. And possibly for the daytime magnesium to up-regulate your receptors. I’m praying your son has good results as well!!!
Hublot, 26 days ago - I do feel much better with the iron tablets as per my last post, my only concern with taking the iron every day is causing constipation, any advice in this, Hublot
Hidden - This form of iron is supposedly non-constipating.
Hublot, 25 days ago - Thank you, that’s a relief
Hublot, 19 days ago - How long can you take iron for, can I do any damage taking if every day, I do feel Much better taking it, last night I only took 28mg as I was worried I may be taking too much, but I had to get up early hours and take another 28mg then got relief very quickly.
DesertOasis, 14 days ago - Hublot, I never saw this reply. It’s quite incredible isn’t it - that immediate relief from something as simple as 28mg of ferrous bisglycinate. All the wasted years 😎
Hublot, 14 days ago - I must admit it is good, I am getting much more relief it, I take it a couple of hours before I take 159mg Pragabalin, I am sleeping so much better, the side effects of the Pragabalin have certainly improved, although since coming off pramapexole then into gabapentin now tge Pragabalin I do feel my weight has increased, I hope this will settle down
Rotigitone is Ropinirole in skin patch form and is 1.5 times stronger. The max listed dose for Ropinirole is 4mg, but that's years out of date. Experts say it should be 1mg.So adding 2mg Rotigitone patch takes you up to 7mg of Ropinirole hydrochloride.
You will suffer severe worsening of your RLS so DO NOT start the patches.
Reduce the Ropinirole instead. Ask for 0.25mg pills so you can start dropping easily.
Hi Jools
I have a question. I have PTSD and have tried to come off SSRI but I get super teary after about 5 weeks, crying constantly about nothing. So go back on them. Is there an SSRI that is ok? or do I need to withdraw from that too. I would love nothing more than to be drug free but I feel that goal is so far away. I feel abit upset now just thinking about it. I've experienced a lot of trauma in my life, even just 4 years ago. I can't believe I'm sharing, but lifes been pretty tough and maybe I'm masking behind the drugs. I feel like I've been counselled to death and there's no way out. I would love a clear mind and body.
I totally understand. Your anxiety and depression will have been exacerbated by the Ropinirole.I attach a video below that I took part in with BBC reels. I explain how Ropinirole used to make me feel. I was in a constant, wound up, agitated state. That's what augmentation does.
After withdrawal, I had PTSD for around 18 months and couldn't sleep with the light off.
But little, by little, I improved.
I'm now doing so well on Buprenorphine and I can't bear to see others going through the same suffering, all because of medical ignorance.
Don't try to reduce the anti depressant at the same time as Ropinirole withdrawal. One drug at a time. So you could start trazodone to replace Nortryptiline and your anti depressant.
You may not need an anti depressant once you're off Ropinirole because you will not be experiencing that wound up, tense feeling any more.
Safe anti depressants are trazodone and wellbutrin(Bupropion) but Bupropion is currently unavailable in the UK and most GPs refuse it as it is only licensed for smoking withdrawal.
Read through HipHop72 posts. Like you, he was on a high dose of Ropinirole and his doctors wanted to increase it because he wasn't improving. He took a year to get off Ropinirole. He recently posted that he is doing well on pregabalin.
You can now take your time and read all the info we have sent you and realise that UK neurologists are a decade behind in their RLS knowledge.
The best doctors are in the USA, where they see thousands of RLS patients a year. They were able to 'join the dots' and realise that ALL their patients were getting worse on dopamine agonists.
You will find that reducing Ropinirole may actually work very well at first, down to 2mg and your RLS will improve temporarily. That happened to me. I reduced quite quickly to 2mg and my RLS improved. The last 2mg was incredibly tough. But, you're young and that works in your favour. Stay strong, and do not be swayed by your neurologist. The evidence in your case is OVERWHELMING. You have ICD and you have been suffering augmentation for over 4 years. Any neurologist with basic knowledge of RLS would spot that immediately.
As your son is heading down the same route, you really need to learn all you can about this disease. Start with the Mayo Clinic Algorithm and Dr Berkowski website.
Boofoo safe meds for anxiety include Buspirone and Propranolol. Safe med for depression is Trazadone. Take things slowly you can't wean from everything at once .I would personally choose to wean from the Ropinerole first at least until you are halfway off so down to 2mg before you start on anything else .Slowly, slowly
Hello Boofoo. Your head must be swimming with all this information. So much to take in. So many of us on this forum have gone through what you are going through. I was on Ropinirole for 16 years and got up to 8mg a night. I then became informed about augmentation and RLS "triggers". I was desperate. My choice was (you may decide differently) to first eliminate triggers. I started tapering off the SSRI I was on and discontinued HRT. Gave up all alcohol and caffeine and sugar. Then I started my slow taper of Ropinirole. For me slow was the key. I did have some iron infusions which helped a bit, but nothing helped as much as getting off Ropinirole. I was prescribed various opiates during my withdrawal, which helped, but I had to be very careful because they made me very sick. Honestly, getting off this drug was the most difficult thing I've ever done. Increased symptoms, very little sleep and depression. But I did it! It's been over 2 years since my last dose. My RLS is now a small fraction of what it was while augmenting. I rue the day I accepted the Ropinirole prescription. I thought it was a miracle at first but that quickly changed and I didn't know why until I became informed. Sending you lots of positive energy and hopes for a better future.
Thank you.... yes my head is definitely full. I'll be honest I'm super scared to withdraw but this time I feel I will be better prepared. Like you I thought Ropinerol was a wonder drug and to sleep was heaven. I've been up to 12mg when I went back to the Neurologist and thats what I withdrew from and it was horrific, climbing the walls was an understatement. Was put on Pramipexole, reacted badly then back to Ropinerol. I feel like there's hope with knowledge.
I too had to give up ropinirole as the augmentation and GPs attitude to constantly prescribing more was awful not helped by a sleep specialist consultant. After getting off ropinirole my symptoms lessened considerably and were much easier to deal with but I did have to go through a fairly horrendous detoxing stage with little to no sleep. Without the drug however you get back to the basic level of the problem which is much lesser than you’ll be feeling now. It’s worth asking a GP for a specialist appointment with an alternative person - there will be other options around. I know changing who I saw helped a lot and I am now fairly well controlled (not perfect but so much better than in the past). Keep going, you will get there.
Thankyou. It's pretty evident to me that things have to change. Thank you for you comments 😊 xx
Dear Boo,
I can see from the many replies that you have had a great deal of very important advice (especially from Joolsg) and so i am not going to confuse you any further except to say PLEASE DO NOT USE ROTIGOTINE patches I was gradually prescribed (by my GP) them starting at 1mg and eventually 4mg . They caused me to suffer DA augmentation and should in my opinion be BANNED! I am still after 3 months since the last patch suffering and need oxycodone to get any sleep at all. Good luck and please heed the advice of Joolsg & Sue
Davchar
Thank you. I was only one the patch for less than 48 hours so removed it after reading and finally believing what you guys were telling me. I'm still nervous but am certainly taking the advice now.
Dear Boo,
Well done absolutely the right thing to do.
I am amazed that you were prescribed straight onto 4mg patches. i started at 1mg and GP wrongly kept increasing the dose as my RLS got worse. Since suffering augmentation I have tried with another GP to find a way to "ease"m e through the withdrawal months. I believe that I have got some relief from a mix of oxycodone (20mg/day) and pregabalin (150mg/day) but this varies of course from person to person.
Please keep advising this forum of your progress and you will find the support you get helps a lot.
Davchar
I definitely will I'm so grateful and scared at the same time! Does that make sense
It makes sense but please don't be because the forum for me it far more supportive than the medical profession on this disease. When i was at the height of my augmentation I did a list of medicines which I had been prescibed since i went to them in 2016. There were 14 medicines on the list mainly various antidepressants and dopamine agonists. I was literally being gradually poisoned.
There is a way forward
davchar.
Hello Boofoo71. Oh you poor girl, my heart goes out to you. We all think our GPS and Consultants know best, in the majority of cases they probably do if they are dealing with something that they specialised in but RLS is different and the medical profession generally has not updated its information since Ropinirole (Dopamine Agonists) was the first line treatment.
I hope I can give you some encouragement. I was prescribed the Nupro patches 4mg slow release years ago but they stopped working so was prescribed, by a Neurologist, Ropinirole which I could increase up to 6mg a day. Condition got out of hand with some embarrassing side effects. It wasn’t until I joined RLS-UK that I was advised to wean myself off it. That was just over 12 months ago now and am fully Ropinirole free and taking Progabalin after consulting Dr Jose Thomas at the Spire Hospital in Cardiff. Telephone 02920735515. You can google him and read about what he specialises in. I had a private consultation with him face to face, although I live no where near South Wales but he will do on line consultations and I believe that he does NHS work as well but the Welsh NHS is governed separately from the English NHS. Anyway I reduced my Ropinirole dose by 0.25mg a night every 2 to 3 weeks until the body settled down. I won’t lie to you, it’s not easy and requires a lot of determination and a real will to succeed. Unlike withdrawing from class A drugs you get little or no help from anybody can’t go into rehab and be medicated for withdrawal until it goes away. But thousands of people suffer like us and have come through it with the help and support of this Forum. Google Mayo Clinic Algorithm on RLS and it’s treatment. I’ve got a young GP in training at my Surgery who admits they have no training in RLS and think it’s a rare condition. It’s a journey well worth taking and in truth the time has flown by but please please take that first step , it’s like the advert for hair care products that has the by line (Because you’re worth it) and believe me you are.
My very warmest wishes to you and whoever is there at home to support you 🤗
Thank you so much its so reassuring knowing the people who have come out of the other side and so recently too. Your words mean so much 😊♥️
Thank you Boofoo71, you are very very welcome and we are all with you 🤗
I'm just trying to digest everything, and get a bit more educated. Ive just taken my requip 4mg as its slow release, so I take it the same time every night as I start twitching so I know it must be nearly time, and for the split second and a tiny glimpse of what withdrawing will be like, I thought it will be fine to stay on it. I know its not and I going to do it, but just that little jerk and the thought of it continuing in the near future made me stop and feel pretty scared of whats to come. Just being honest 😕
Hi Boofoo71, please don’t be scared you have suffered RLS for a long time and it will only improve. I found that almost as soon as I had taken my Ropinirole 6mg tablet it would send my RLS off the scale until lit settled down after about 45 minutes. So it’s recommended you reduce your Ropinirole by 0.25mg over a period of 2 weeks and you will find that your body becomes accustomed to the reduced dosage. I found that sometimes I waited 3 weeks before the next reduction, your body will tell you but don’t leave it too long between reduction. I also found that as my Ropinirole reduction progressed that the severity of my RLS symptoms reduced and with this so my determination was boosted as yours will be. Try not to think too far ahead as you could find that daunting but take it one day at a time. My opinion and it’s only my own with no medical basis for it as I wasn’t using Nupro patches at the same time as Ropinirole is to continue with the patches until you are off the tablets then ask for lower dose parches, not sure what the minimum strength is but your GP will advise on that but that’s some way down the line. So one step at a time and you will start to feel better and never forget that thousands are starting the same journey. 🤗
Thank you and I think I'm ready and will certainly be reducing 0.25mg at a time. Baby steps 😊😳🤔😁
Go for it girl and keep in touch with the forum, 🥳🥳
If you're up for it, here is an article by Dr. Winkelman, Chief of the Sleep Disorders Clinical Research Program at Massachusetts General Hospital, that describes the problem with DAs. He is working to raise awareness of long-term complications with these drugs.
sleepreviewmag.com/sleep-tr...
It's worth a read.
Thank you I will definitely read it. My son has a very rare sleep disorder. I've often wondered if there was a correlation. I feel I've research my sons condition with all its related data and neglected my own.
Boofoo it might make it easier to do another post listing all the meds you are on and how you are planning your weaning including any painkillers you have to help you .With all the replies you have had it can get complicated for you
Just done that but forgot to mention Tramadol!
I'm so shocked hearing everyones stories. Sometimes it feels such a lonely diagnosis and embarrassing when I cant sit for long in social situations, when I move all the time. When people just don't understand how debilitating this is. I cried so much this morning at finally knowing you guys understand. I wish I'd have listened 4 years ago
Hello again Boofoo71 really sorry to hear about your sons condition. I sent you contact details for Dr Jose Thomas at the Spire Hospital Cardiff. I don’t know who’s treating your sons sleep disorder but Dr Thomas is an acclaimed expert on these disorders and if you need help for your son then I’m sure he will help if you email him.
drjthomas.nhh@gmail. com
He responded to me very quickly and is a delightful chap. Don’t forget the dot after thomas. As I said on previous post, he does NHS work as well as his private clinics.
Very best wishes Hiphop1972.
Hi grassgreen. I'm getting through the sent articles one by one and I found this one very interesting, in regards to a neurologist usual prescription will be for Parkinson's, which requires higher doses of DA's, and because we suffer similar traits to this, we get put on a high dose that they continue to increase overtime. I just found the article to have an ah-ha moment. It actually makes a lot of sense knowing why neurologist still prescribe in this manner. Thank you 😊
So so sympathize with you.........i am currently on the road to "dopamine free".
On my previous posts you can read the long version but in short......
I was on 1mg of Pexola at night.
A family member who had severe RL was advised by her neurologist to change her method of taking her medication and was RL free. I did the same
and............
I divided my dosage into 0.25mg at 8am, 2pm and 8pm and little or no RL which I did for about a month. It was absolute bliss being free of the "crawlies " after 20 years!!! BUT I knew from the forum and research that augmentation would eventually start.
I again started my withdrawal from Dopamine.......
I cut out the 8am dosage (0.25mg)and still little or no RL except if I had some of my triggers too late in the afternoon, which are red wine, chocolate and salty/spicy foods.
I then cut out the 2pm dose (0.25mg). Not good. I am now breaking the 0.25mg in half at 2pm. Suffering more with withdrawal than I did but nowhere near when I did it when I was on the nightly dosage of 1mg a few months ago!!
If I can help just one RL sufferer then I will a "happy chappy"
I wish you well on your journey. Don't up, we with you all the way!!!
Thank you its nice to here others that have been through it, and are going through it
Ive been on 3mg for 5yrs recently the GP has up the dose to 4mg. I am getting some sleep maybe 10 -12 hrs a week. I hve developed a allergy to the patches which leaves me with burn marks. So in answer to your question, see how you go good luck!
Are you talking about the neupro patch? If so 3 mg is the max for RLS and if you need to increase it you are suffering from augmentation. See everything everyone else said about it. To come off the patch, ask for 1 mg patches and cut in quarters and reduce by one quarter every 2 weeks waiting until your increased symptoms subside before reducing further and if necessary cutting the patch firther.
Apologies Sue, I wasn't very clear. I stopped the patch straight away, as I'd only used 2 patches and never put anymore on after reading 'Dont Do It'. It was more my Sertraline and Nortriptyline, shall I wait until I've reduced the Ropinerol? One drug at a time?
Actually my reply was to Histology2020 about the patch.
On nortriptyline they are conflicting reports. This study actually shows it improves RLS Https://pubmed.ncbi.nlm.nih.gov/31942156/ and Dr Buchfuhrer a world renowned expert says it is fairly safe. However RLS-UK lists it as not safe. So I would stay on it at least for now.
As for Sertraline you might want to wait or not. I would say that is up to you and your doctor. The advantage of weaning off it now slowly is you get off something that is making your RLS worse. The disadvantage is you might have withdrawal effects, however I imagine if you go very slowly you won't have any.
I apologise I didn't read who the reply was too. I'm still navigating my way through everything. Thank you for the info on the rest😊
No need to apologize. It is an easy mistake to make especially since it was about the neupro patch.
Ive just a reply to Jools re: a conversation I've just had with my neurologist
Would it help to reduce your fear of reducing ropinirole if I were to tell you that if you suffer too much by reducing 25 mg every 2 weeks, you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. It will take longer but be easier.
On the antidepressant when you get ready stop it and take trazodone, ask your doctor if you need to wean off it or whether you can switch directly.
I'm obviously nervous but I feel I can do 0.25. No pain no gain. I've been on military tours, I can do this, (I'm trying to convince myself) I'm so grateful for everyones advice. I just need to grab my big girl pants and fight it 😊💕
No, you don’t need to put your big girl pants on. You’ve been unnecessarily spooked. Once off the Anti-ds you’ll have no problem decreasing the DA. In the meantime you’ll be prescribed Lyrica or Gabapentin. People will sometimes hit a wall once they’re down to the last drop of the DA. And sometimes not, especially if they have an opiate like tramadol to see them through. Which you have. If you can’t get off that last little bit of DA, then you can’t. This is a no suffering zone, as far as I’m concerned. Your doctor is never going to refuse you a DA. If you have to stay at a low dose so be it. You can even switch, at that point, to a 1mg patch which allegedly has little risk of augmentation or ICD. The point is to find out the lowest effective dose of whatever you need, be it an opiate, or DA, or combination of drugs. Once comfortable you get to play. One man recently stopped his Gabapentin and is now only on magnesium. Others like Widebody are only on iron. Widebody’s history is similar to yours. We know way more now than even a few years ago. So horror stories from a few years ago are outdated. IF drawing down precipitates any feelings of RLS just plain stop at the point that’s good. And see if adding or increasing some other RLS med will allow you to continue the draw down. That twinge of RLS you feel before taking the DA will be gone once off the sertraline and amytryptaline. It will return at a much lower dose, maybe.
I could be wrong, but I don’t think GreekStudent “suffered” at all coming off the DA:
healthunlocked.com/rlsuk/po...
He’s now solely on magnesium. If you give me enough time I’ll come up with just as many “this is no big deal” stories as horror stories.
That's a nice way of putting it. I guess I'm not going to know until I start the withdrawal. Thank you for your help and thoughts 😊
Sorry Desert Oasis, but that is totally incorrect.The patch DOES cause ICD and Augmentation.
It is Ropinirole in patch form.
Several people were switched to it in the mistaken belief it had a 'low risk' of augmentation.
Within a few months, augmentation happens again.
Once the D1 receptors are over stimulated and up regulated by Ropinirole or Pramipexole, switching to the patch will NOT help.
The lower risk of augmentation and ICD applies to drug naive patients.
This lady has to get off all DAs.
Also, there are very few people who do not experience a tough withdrawal from DAs. Most will have a very difficult time. I did. SueJohnson did.
Dr Earley confirms that most of us will have a difficult withdrawal.
Further confirmation that switching to Rotigitone patch does cause augmentation AND makes it harder to withdraw! rls.org article on augmentation attached.
Text
Hi Jools (update)Ive just got off the phone to my neurologist to air my concerns, and I guess to maybe wonder if I misunderstood. As I also had a brain injury resulting from the same incident whilst serving in the military and got medically discharged, and sometimes can misunderstand, and it can sometimes be hard fully grasp conversations. This was his response, and read from the clinic letter he had written. "Take the patches, see if you have any side effects. In the next few days if you are find drop the Ropinerol from 4mg to 2mg" I then questioned, do you mean go from 4mg down to 2mg all at once? He said "yes" he then stated that (after I also mentioned my fear of ICD continuing) "the ICD is a lot less on the patches and would work alongside Ropinerol, with the hope to eventually maybe trying Pregabalin. Take Magnesium. Get your bloods checked and we'll look into iron infusion". I politely thanked him for his time and ended the call.
I'm not surprised.The man is clearly covering his tracks.
He is dismissing your concerns about ICD.
The expert advice is clear. If the patient has ICD, get them OFF dopamine agonists.
I definitely think you have to ignore this man.
Your RLS will NOT improve on 2mg patches and 2mg Ropinirole pills.
The augmentation and ICD will still be there.
Please now speak to either Dr Jose Thomas at Gwent Sleep Clinic or Prof. Walker at Queen Sq.
And consult a legal firm. Use the same firm that Snoops used. Send her a private message. They will have all the research papers about Impulse Control Disorder.
healthunlocked.com/rlsuk/po...
I am certainly ignoring his word. My next plan was to email the aforementioned. I will make contact with Snoop also. Thank you
I'm just getting my information sorted and am in the process of emailing email Prof Walker. I didn't tell my neurologist Id even been on the forum, I just said I was concerned after reading the side effects of the new medication. I'm assuming Prof Walker is aware of the RLS forum? He certainly has an extensive impressive background.
Prof. Walker is certainly aware of RLSUK. He spoke at our AGM on 7 October, about iron infusions.So he is aware we have a help forum and that we refer many patients experiencing augmentation to him.
Just ONE word of caution. He is aware of augmentation and ICD BUT he has been known to say he believes up to 2mg Ropinirole will NOT cause augmentation. That isn't the case. We have had people on here with augmentation on 0.5 and 0.25mg Ropinirole.
As long as you make it clear you have ICD and have RLS in your arms and shoulders, etc, he will realise you need to get off Ropinirole and he'll help.
Ok I understand. Thank you. 😊 I've picked up a few of his quotes and things he refers too. Looking at my past clinic letters ICD seems to be stated a lot, yet still prescribing the Ropinerol and increasing it from 4mg to 6mg. Between 2015 to the present day (8 years) taking from 2mg to 12 mg of Ropinerol continuously and suffering with ICD and Augmentation. All documented. I appreciate new research has taken place but its somewhat concerning
You need to change neurologists ! !! He is sooo wrong about everything. Don't listen to him.
I'm not Sue I promise.
This just strengthens your legal case you have made a point of speaking to your Neurologist about your problems with the ICD and he has ignored it
No suffering here. healthunlocked.com/rlsuk/po...
That is a very positive outcome thus far! And some great tips. I hope my updates are the same 😊
That post is from 4 months ago. It seems he was still doing quite well a month or two after that post.
Its seems doing it slowly, as in 0.25mg a time seems to be the best way. I guess I'll know when I start me decent on Friday. Hopefully helps my insomnia too which is the worst its ever been. 😴😴😴😳😳😳
He was on Morphgesic during withdrawal which would help ENORMOUSLY.
Oxycodone is 2x stronger. Yes, opiates help enormously, that’s why we, and RLS experts, recommend them, including Dr. B who feels he knows how to make it a substantially easier process.
I have been on the patches for a few years now,but they started to not be enough,so I was put on Buprenorphine,5 mg at night under the younger,it does the job,although sometimes it is a hit and miss,ii t works reasonably well.
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