Augmentation

[MFNS]

I have been taking high doses of Ropinerole for past ten years. It is no longer working. This is my 6th day of withdrawal. ANy suggestions to alleviate my pain and discomfort. Have been to ER twice. Doctors do not know of care avout this conditon

[puzzler1]

I’m really sorry to hear you are suffering with this. You’ll get good advice from other people on this forum who have more experience than me.

Just a couple of questions for you. When you say you’re withdrawing from ropinerole, have you just stopped taking it altogether or are you reducing the dosage slowly over a period of months. And what’s your usual daily dose of ropinerole?

If you read other posts here about dopermine agonist augmentation caused by taking ropinerole or Pramipexol for many years, you’ll see it’s dangerous to suddenly stop taking them and you have to reduce very slowly.

I was on Pramipexol (6 tablets of 0.088/0.125) and after nearly a year of slow reduction I’m still taking 2 a day.

You’re not alone in this, hundreds of sufferers are going through the same thing right now and you’ll get help here about the best approach to take.

Withdrawal is awful and recently my doctor prescribed buprenorphine (Temgesic) to help me. It’s been very successful for me but there are other alternatives if you can’t get this.

This forum changed my life from despair to hope, so I hope you find the same.

[MFNS in reply to puzzler1]

Thank you everyone who reached out to me. I completely stopped taking this drug. It was the worst experince of my life. Intense pain in my back, legs aching, twitching, ...I could not sit or lay down for over two days, went to Hospital Emergency for help and was put in a room and ignored so walked out. Then next day, cramps in my left arm. Called a Nurse for advice, then taken by ambulance to another Hospital with very high blood pressure ( I was super agitated) Once they determined it was not a heart attack , I was kept and released after several hours while begging for medication. Given one Tramadol pill and sent home at 4 am ....by 8:30 am I drove to a Urgent Care walk in clinic, full of people. I knew it would be several hours before i was seen so I drove myself to the 1st Hospitals Emergency Room.. It was not busy and i was seen right away. They gave me a shot in the butt and a presciption for 6 Hydrocodone pills. When I got home, i took one of the pills, became real dizzy and think I passed out. Today is day seven and I acutally slept most of the night. I located a Doctor near by who specilaizes in RLS, but cannot get an appointment until December so I am on my own. I am taking OTC Magnesium, Calcium daily as well as an iron pill every other day. . Asked my Nurse Practioner to order labs to check my iron levels. Again thank you

[LotteM]

Puzzler1 is right. Go slowly. And dropping one tablet a week is not slowly.

The other main recommendation is to get your blood iron values, including Hb and ferritin. Especially for ferritin it is not enough for people with RLS to have normal values, as that can be as low as 15ng/l. If your ferritin is below 75, start supplementing once every other day with iron bisglycinate. No prescription required. The increase will be slow, but helps quite a few people. The website of Johns Hopkins (US) on RLS has a section on causes and especially iron. Worth reading and listening to the videos.

Finally, with every reduction your RLS will increase. Temporarily. Usually it settles somewhat after a few days or more. But it is hard. If your gp is willing, ask to get a strong painkiller prescribed to help with the withdrawal. Usually tramadol or oxycontin are used. Look up the NICE guidelines for RLS. I can't access and post them, as I am outside te UK.

For the future, you may need another med to replace the ropinirole. Do NOT accept another dopamine agonist (DA, pramipexole or rotigotine patch) as they will again lead to augmentation, sooner rather than later. Usually, an alpha2delta ligand is prescribed, gabapentin or pregabalin. They take a while to start working (some 3 weeks) and doses meed to be increased slowly to reduce side effects. Also, effectiveness will be difficult to assess while you're still withdrawing from the ropinirole, thus it may take time.

Good luck. Come back for more support or to moan about your difficult process. We understand! And meanwhile, do loads of reading, on this forum and on linked sites. Knowledge is power.

[H12X]

This forum helped me go through augmentation earlier this year, without two people in particular I couldn't have done it. Everyone here offers support and it works. I'm still trying to cope with RLS as it has returned particularly strong, but I know with this forum's help I will get there. Please don't give up, keep strong and know you are not alone with us awful condition.

[Jumpey]

You have been given great advice.

I just wanted to say hang on in there and good luck.x

[RidiculousLegs]

Yes I was in the same boat and my son ordered CBD oil for me from Vancouver. the company is called Birch and Fog SLEEP

[WideBody]

Please go slow. From my personal hellish experience Dopamine Agonist Withdrawal Sydrome (DAWS if you want to google it) is real. Bad thoughts and behavioral changes are real. Please notify your family and close ones to watch for changes in your behavior. I didn't notice and you probably won't either.

I do not envy your position. Digg in for the long haul, it DOES get better, but you need to find out what works for YOU. We can make suggestions, but only you know. The problem is most things take time.

I do hope you have a good physician to work with. Obviously blood testing first to look for any causes, iron, mineral electrolyte deficiencies . Then start with all the tools you have acquired through the years.

Drugs may help you get past the DAWS phase, but they are just a mask. I believe the alpha-ligands like Gabapentin are the current first line of defense and may help you. I don' know if you have other conditions or are taking other medications, so it is best to find a good Doc.

Good Luck.

[Joolsg]

I realise it's too late but I would have advised you to reduce the ropinirole by 0.25mg every 10/14 days. You have clearly gone cold turkey which is hell on earth and as you have discovered, doctors know absolutely nothing. You're in the USA (as we have A& E here in the UK.)

Opioids are the best treatment for RLS after you have augmented on Ropinirole so hydrocodone will help but you will need more. Pregabalin doesn't seem to work as well for people who have suffered bad augmentation ( according to Dr Buchfuhrer in California). Methadone or buprenorphine are options for your doctors to consider now. There are several excellent RLS doctors in the USA. Where are you? Maybe you can get an earlier appointment with another specialist.

You should inform the doctor who prescribed ropinirole what you have done & been through. He/she should have advised you of the risk of Impulse Control Disorder and augmentation and how to reduce Ropinirole safely.

I hope you are coping as I remember how awful withdrawal from Ropinirole was.

If marijuana is legal in your state, definitely try it. It will calm your legs and help you sleep.

[RLSofManyYears]

The advice about slow reduction is absolutely spot on. It took me a year from drop from 4mg Ropinirole to zero. It was a long HARD slog to get to the base line, which was effectively no sleep at night. However, in agreement with my neurology consultant here in the UK, I started on Pramipexole with a view to keep to minimum levels and switching back and forth between Pramipexole and Ropinirole when one stopped being effective.

I'm actually about to switch from Pramipexole to Ropinirole as I'm waking up every hour or so due to my body jerking (that's how RLS presents itself in my case).

If anyone else is reading this may I strongly stress that you NEVER suddenly stop a dopamine agonist - it must be gradually reduced.

[Joolsg in reply to RLSofManyYears]

I’m shocked you’re on another DA after augmentation on Ropinirole & managing to get off it. RLS every hour screams Augmentation. Why didn’t neurologist put you on pregabalin or low dose opioids? They would be the better option after augmentation.

[RLSofManyYears in reply to Joolsg]

Joolsg & Manerva

I'm already on 100mg Pregabalin. Dopamine agonists are the only thing that really works for me. Pramipexole gives me about 3-4 weeks of sleep and then several nights of no sleep as I come off that and then onto Ropinirole for 2-3 weeks. I have been on several different medications (gabapentin, clonazepam, amitriptyline, rotigotine patch) but only the DAs work. The clinicians have to work within the NHS guidelines here.

The Pregabalin is taken to help reduce the sensations I get in my arms (which used to stop my work at the keyboard).

Ramping down and then coming off a DA means that I literally get no sleep.

I'm classed a severe, btw.

[Joolsg in reply to RLSofManyYears]

Manerva and I are both in the UK. I understand that you’re prepared to stay on DAs if you get 3 weeks of sleep without any RLS. As you are probably aware Amitriptyline should not be prescribed for RLS as it causes it or worsens it in over 99% of sufferers.

Pregabalin only works if you’re not augmenting on a DA and 100mg is slightly low dose for RLS.

Manerva’s posts include all the latest UK NICE & NHS guidance for RLS.

I hope you can keep the RLS at bay using your rotation method.

[Joolsg in reply to RLSofManyYears]

Has your neurologist considered low dose opioids? A lot of people here in the UK take them for RLS. Also Buprenorphine has been prescribed here in the UK for RLS- as long as you can persuade your doctor.

[RLSofManyYears in reply to Joolsg]

Jools

Thanks for the heads up on Amitriptyline. My GP prescribed it to me to help me sleep and I was not aware of its impact on RLS.

I have been on upto 300mg Pregabalin before but in conjunction with the DA to help reduce the sensations in my arms. What are you suggesting re Pregabalin once I am down to zero DA? I really struggle with lack of sleep when I ramp down and it is very difficult to handle my body trying to fall asleep but being jerked awake.

I've tried clonazepam but I find it does not have any effect on me.

[Joolsg in reply to RLSofManyYears]

Pregabalin only works when you’re through withdrawal from Ropinirole & takes 3 weeks to become fully effective. You can increase gradually up to 300mg & it should help both RLS & sleep. Neurologists keep prescribing it when someone is augmenting but it won’t help until Ropinirole is out of your system.

However, there are many who don’t respond well to pregabalin after Ropinirole- Dr Buchfuhrer has a theory that the Ropinirole has caused permanent damage.

If pregabalin doesn’t help after 2-3 months you’ll need to find a US doctor familiar with low dose opioids.

If you’re near New York- Dr

Glen Brookes prescribes low dose Buprenorphine with excellent results.

[Hidden in reply to RLSofManyYears]

As Jools says NOT a good idea to go from one dopamine agonist to another, it doesn't achieve anything.

Better to get off dopamine agonists altogether.

[dklohrey]

I took ropinirole for about 20 years. I worked myself up to 3mg a day, taken at night. I kept trying to convince myself that I wasn't going through augmentation. I even bought compression socks which helped to relieve my RLS symptoms during the day. I so did not want to face the withdrawal. I finally decided enough was enough and started my withdrawal process. After a month I am now down to 2 mg a day and plan to stay at that for another three or four weeks. My doctor prescribed 200 mg of gabapentin to help me during the process. It does seem to help. Today, for the first time in weeks I feel normal during the day - how I missed the feeling.