Augmented, now a drug holiday

[PianoRunner]

Diagnosed with RLS 14 years ago. Since then, was on Pramipexole and augmented. Then prescribed Ropinerole and augmented. Saw a new neurologist (which I love!) and it is time for detox from all dopamine agonists. Scared to go through this, but know that it's necessary. What did you all do to help with this process? Dr. tells me to expect 7-10 days with little to no sleep. Ugh!

[ChrisColumbus]

You may know all about this from your neurologist, but you would probably benefit from advice from SueJohnson , Joolsg or others who have been through this- who will no doubt spot your post before long - on coming off very slowly, and on when to start on an α2δ ligand - gabapentin or pregabalin - or a low dose opioid.

How much ropinirole are you currently taking?

[PianoRunner in reply to ChrisColumbus]

1mg. two hours before bedtime. I've suffered for a long time, but have been resistant to taking more than that, knowing that augmentation occurs.

[SueJohnson]

Do NOT just stop taking ropinirole. First off check if you are on the slow release ropinirole (pramipexole). The slow release ones usually have ER or XL after their name. If so post back here as the advice will be different.

To come off ropinirole , reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. 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.

Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They 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. Pregabalin is more expensive than gabapentin in the US. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) If you are over 65 and susceptible to falls beginning dose is 100 mg (50 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 split the doses with pregabalin)

Most of the side effects 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. 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). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done.You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. 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. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

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 at Https://mayoclinicproceedings.org/a...

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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.

[PianoRunner in reply to SueJohnson]

I am SO GRATEFUL for all of this detailed information!! I will refer to it often as I continue this process. Yes, today I am headed to get blood work ... specifically, "Ferritin assay", "Iron + TIBC sesr/plas" and "Iron % saturation". We will see what those results are and then move ahead to get these DA's out of my body!!! Again, my gratitude for your time and information!

[Boldgirl45 in reply to SueJohnson]

Hi Sue sorry to jump on this post but I would love to see the advice for the slow release tabs ?

[SueJohnson in reply to Boldgirl45]

The slow release version is formulated as a 3-layered tablet with a central, active-containing, slow-release layer, and two placebo outer layers acting as barrier layers that control the surface area available for drug release. They are intended to last all day.

For example a .5 mg pramipexole tablet is equivalent to taking .5 mg twice a day, so if one reduced by .5 mg of the slow release tablet one would in effect be reducing by 1 mg. And if one cut them one would be taking 1 mg all at once.

One would need to switch to regular pramipexole. And to do so one would need twice the dose to be equivalent.

[Boldgirl45 in reply to SueJohnson]

Ok thanks Sue !

[RiversW]

Hey Pianorunner, First, I would say this process is different for everyone. I have been through detox from dopamine agonist twice. The first time, cold turkey, Primopexole. I was unsuccessful. The second time, just 10 weeks ago, Neupro, with the help of a 20mg Buprenorphine patch, I succeeded. It was bumpy, but nothing as severe as my first attempt. I would suggest asking your neurologist to prescribe a low dose opioid to help you detox. For me it was a no-brainer.

Also, I am still on the buprenorphine patch and feel better that I have in 25 years.

Good luck and keep us posted, Rivers

[PianoRunner in reply to RiversW]

Thank you for your reply. When you say that you were unsuccessful going cold turkey off of Pramipezole ... do you mean that the symptoms were just too severe to do it that way? I appreciate the information about Buprenorphine. I wasn't aware of that method. Wishing all of us calm and peace.

[RiversW in reply to PianoRunner]

Yes I was unsuccessful the going cold turkey because the symptoms were too severe. I did not sleep for three nights and was starting to fall asleep while I was walking. It was getting too dangerous to keep trying. I was afraid of getting hurt. Hope is helpful to you. Take care. Rivers

[Joolsg]

Plan in advance. Have time off work/socialising.If kratom is legal where you are, take a teaspoon at night. Get medical cannabis and use whenever needed.

Have you had iron panel blood tests?.Raising serum ferritin can help a little during withdrawal.

What replacement meds will you be starting?

Sleep whenever and wherever you can.

Good luck. It's tough, but many of us have been through it.

[PianoRunner in reply to Joolsg]

Thank you for the tips. I am a high school teacher and retiring in 2 months. Yay! So, time off work, any time soon, would be difficult. I'm going to the lab today to get blood/iron panels drawn. Honestly, my Dr. wants me off the 1 mg. Ropinerole daily ... cold turkey. He discussed adding replacement meds, but it was my understanding that they would be prescribed after the detox phase is over The whole detox process sounds frightening! But,I will reach out to him, again, for clarification. Wishing all of us peace and calm.

[Joolsg in reply to PianoRunner]

There are 2 withdrawal methods.Fast - over a 3 week period, followed by 2 week's drug free, as proposed by Johns Hopkins University.

Slow- as proposed by all the other RLS experts, including starting replacement meds around a month before the last dose of dopamine agonist.

No doctors recommend cold turkey!

On here, we recommend a slow reduction of 0.25mg every 2 weeks with the help of a low dose opioid to settle increased RLS at each dose reduction.

[PianoRunner in reply to Joolsg]

Thank you for the info. I've reached out to my doc again for further instructions. Stay tuned ... and I appreciate your help!

[SueJohnson in reply to PianoRunner]

If you do either the cold turkey or the fast process over 3 weeks, I guarantee you will be taking off time from teaching.

[PianoRunner in reply to SueJohnson]

Well, I may need to adjust my timetable, then. Retiring in June. Hmmm .... ???

[Joolsg in reply to PianoRunner]

Wait until nearer to/after retirement. Withdrawal is brutal.

[TheDoDahMan]

There's a very good chance that the difference between going through hell or not depends on whether you can find a doctor brave and knowledgeable enough to prescribe you low-dose opioid therapy while you kick the dopamine agonists.

[Tigger1001]

I stopped pramipexole cold turkey and started on pregabalin at the same time. The first two nights were terrible. I had some oxycodone left over from a surgery, so the third night I took a pill (along with the pregabalin). The oxycodone made the nights bearable. After three nights with the oxycodone, I took half a pill for a couple more nights. After that, I stopped the oxycodone and was fine being on just the pregabalin. So, in one week, I had converted from pramipexole to pregabalin.

[PianoRunner in reply to Tigger1001]

Thank you for the information. I reached out to my doctor and that is his plan for me ... Cold turkey, while adding Pregabalin. I have no access to oxycodone, though. I've been a marathon runner for 30 years ... so, I think I'll be getting little to no sleep and a lot of steps in during the detox process!

[Tigger1001 in reply to PianoRunner]

Your doctor won't prescribe oxycodone? How about tramadol?

[scppie]

Just hard core power through it. I did it two years ago and you will make it. Just be prepared for a severe lack of sleep for several weeks depending upon your current dose.

[PianoRunner in reply to scppie]

Thank you for the encouragement. I know of the difficulties ahead, but I'm ready!

[DogsCatsFamily]

I would also suggest that you start closer to May as the first several weeks may not be an issue as long as you go the slow route of down .25 every 2 weeks. I know from reading on here that it is different for each person and how long they've been on the medication. I was so nervous getting started after reading how difficult it has been for some on here. Fear can be a deterrent for success as I believe we need to stay as positive as possible as we go through this. I am in the process on getting off of 2mg a day of Ropinirole but thankfully I was only on it for a year before I realized that I needed to get off of it ASAP. I am over half way through doing it the slow way and I haven't had any issues yet, but I understand the lower the dose the more difficult it can become. Anyway best of luck to you as you find a healthier new life. P.S. I'm also taking some Gabapentin as I lower my dose as my doctors with my insurance wouldn't give me anything to help but I found an online doctor (without my insurance) who would and I'm 67 years old if that matters.

[PianoRunner in reply to DogsCatsFamily]

This is a scary situation, for sure. But, I'm ready! Thanks for the information and the time that it took to respond.

[Kejimkujik]

I am currently tapering off pramipexole after being on it for 12 plus years. My Dr originally had me go cold turkey over a week with the plan of switching to ropinirole. I was taking 0.75 mg pramipexole daily and augmentation had led me to needing more to get through the day, let alone the night time. That week was hell, shear unadulterated hell. The RLS was so severe I could not be still for more than five minutes before it hit hard. My anxiety levels, which were not an issue before, escalated beyound belief. My husband actually thought we should go to the ER. At the end I went back to my Dr and told him I was suicidal and struggling with suicidal ideation. Yes I was making plans. I went back onto pramipexole and the augmentation kicked in and my days revolved around when to take the next pramipexole.

I have finally got in to see a neurologist who was shocked that I was asked to cold turkey without supports. I am now tapering. I started an iron supplement (300mg every other day plus 500 mg C chewable). After about a month on that I started with 300mg gabapentin. I would wait a few days to allow for any side effects to subside and then increase my 100 mg at a time. After three weeks gradually increasing the gabapentin I started to reduce the pramipexole. I started the gabapentin March 1st. I am niw on 800mg gabapentin and 0.325 (1 1/2 x0.25mg) of pramipexole. I have had times when it has been really tough. Usually in the twentyfour to 48 hours following reduction inpramipexole. Those nights are challenging but the kitchen cabinets are immaculate and the workshop getting there. I planned activities I would do when things got tough so I could distract my mind off the symptoms. I had anxiety managing techniques well rehearsed and CBT techniques in place to manage the mental chanllenges. I have buprenorphine with naloxone already in the bathroom cabinet in case over the next while I need it. I am nit sure at what point I will know whether to take it. I will ask here if neurologist is not clear. I am getting there and the relief of this is now keeping my resolve. People here on this site have given me the support the advice and the strength to keep going. So far it has been amlot easier than I expected, but that week of hell ahiwed me hiw much damage the pramipexole has done to my body and mind, and that keeps me looking forward. This is just my experience, but thought to share, as I am still tapering and it might help down the road on difficult days for you to know you are not alone in doing this and you can get through to the otherside.

[Sleepless82]

I feel for you and anyone else who has to detox off pramipexol type of drug. I was on pramipexol for over 20 years when I agreed with my neurologist to slowly reduce very slowly. I reduced by .125 mg every 7 to 10 days. At first, it wasn’t too bad. It was kind of what I expected. But the RLS got worse after a couple reductions. BUT! After I took the last little bit of the pramipexol, all hell broke loose. My Dr gave me only 300 mg Gabapentin to help with the withdrawals and then she went on vacation for a month. The 300 mg Gabapentin didn’t help at all and I thought I was going to die. I went sleepless for almost 2 weeks. I couldn’t even get relief when I was walking. And I was falling asleep while walking. I walked into walls, doors, windows, furniture, glass cabinets and everything else in my house. I even fell asleep while walking and did face plants on the floor. I’m really lucky that I didn’t get seriously injured. I finally got another neurologist to start increasing the Gabapentin. It then took about 5 months to get up to 3000 mg before I got my first full night of sleep. I seem to have a pretty bad case of the RLS with very few nights that I don’t have to get up and walk for an hour.