I have been taking Pramipexole for over 30 years. (I am 72) I've gone and am going through the gambling and shopping associated with the drug. Currently, I am suffering from augmentation, which I was totally unaware of until my sleep doctor (who sleeps by the way) told me about it.
I have a serious back problem, which requires two five hour day surgeries in which they have to put rods and screws in my back. I opted to get a stimulator implanted . Anyway, I am going through nights without sleep and severe pain from walking so much. I walk, get on a stationary bike, scream and cry, walk again and scream and cry again. I seriously feel that I pass out for a couple of hours every 50 or so hours and back again to walking. . As I walk, I pray that I take my last step and seize to exist. My feet burn from walking and my entire body hurts, and my feet are dead numb. I do my screaming and crying in the garage so my husband won't hear me. Many nights he stays up with me and plays his guitar.
I didn't know about augmentation until this past week. That makes me feel better. I am on the highest dose of pramipexole 1.5 mg. Currently taking .5 in the a.m and .5 in the evening. Currently, I am taking .5 mg in the a.m. and .5 in the evening. I am sleeping four hours one night and zero hours for two nights. Like I said, I think I pass out because when I wake up I am in another room in the house with no recollection as to how I got there.
I have gained forty pounds from not sleeping. I tie ace bandages around my feet and arms, which helps somewhat. I am still sane, I think.
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Josana13
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I'm so sad at your situation.You know you have to get of the Pramipexol.
Do it slowly- by 0.088 mg per week. You could possibly go down faster at the beginning, but don't tie yourself to a strict timeline. Let your body decide, and be prepared to take rests.
As regards the future, your case is similar to my situation. I had a severe accident and broke my spine in 3 places. Got rods and screws and a horrible little bridge ( pedicle). The upside is that I can get prescribed opiates ( oxycodone) for pain relief- but it also does a great job on controlling RLS.
It's quite possible you are already on an opiate for post op relief, so you may be back to adjusting your medications accordingly.
Let us know what medications you are on at present, as some of them may be affecting your RLS.
Hello Madlegs1, I so much appreciate your concern. I am currently on Hydrocodone. I have been taking it for a long time. My medications:Hydrocodone 10/325 2xd
Lisinopro 40mg 1xd
Levothyroxine .112mcg 1xd
Duloxetine .60mg 1xd
Pramipexole 1.5mg 1xd
I was referred to a sleep doctor, who is going to do a sleep study. The doctor recommended to my primary to switch my Duloxetine to Wellbutrin (misspelled). I was told to go down to 40mg of the duloxitine while taking 20 of the Wellbrutrin for one week. The following week 20 duloxetine and 40 Wellbrutin.
As for the Pramepexole, I haven't gotten anything yet but I have reduced it to 1 mg since last week. I plan on to .75 today.
The smallest dose for Pramipexol is 0.088- it may be different in your country.I'm suggesting to reduce by that amount per week until you get to 0.5mg and then go even slower after that.
I would take the reduction out of any morning dose, assuming you are dosing three times a day. If you are taking the 1.5mg all in the evening, then just reduce that one. Your pharmacist should be able to facilitate this structure for you.
I hope this helps you.
You sound sane to me. If I was in your situation I would react the way you have.
I am assuming that you walk so much because of your RLS symptoms.
You say you have augmentation and considering you have been taking pramipexole for 30 years, I'd say you most definitely have. I've never heard of anyone taking it for that long.
If you've recently discovered that taking a dopamine agonist (DA), such as pramipexole, for any length of time leads to augmentation then hopefully you've also discovered that the most effective way to treat dopaminergic augmentation is to stop taking the DA.
I am repeatedly disgusted by the number of doctors who prescribe a DA without any warning of the major complications they cause.
I am doubly disgusted by any doctor who would prescribe 1.5mg og pramipexole for RLS it is TWICE the official maximum daily dose of 0.75mg. It is SIX times what many RLS experts recommend i.e. 0.25mg
You might wish to consider seeking the advice of a medical negligence lawyer.
Because you're on such as massive dose, you will need some help to wean off this drug. You must NOT stop taking it suddenly as this is dangerous.
It's better to reduce the dose of the drug gradually i.e. in small steps over a period of time. You will unfortunately experience withdrawal effects every time you reduce the dose.The slower you reduce the dose, the less the withdrawal effects will be.
You could try reducing it in steps of 0.0625mg. This will require getting some 0.125 tablets and cutting them in half. I wouldn't reduce it any more often than once every two weeks. Depending on how severe withdrawal effects are you can reduce in smaller steps or over longer periods of time, say 4 weeks.
I'm afraid that as you appear to be suffering an Impulse Control Disorder (ICD) caused by the pramipexole, gambling and shopping, you are at risk also of developing DAWS (Dopamine Agonist Withdrawal Syndrome). This can be very severe causing mental health problems.
The ICD should have been treated by stopping the DA when it occurred.
I have no wish to scare you but withdrawing from a DA can be very difficult and many people give up. It is your doctors fault that you are in this situation.
Further help can be obtained for withdrawal effects by being prescribed an opioid. Typical, milder, opioids which can be prescribed for this are codeine or tramadol. A low dose of a more potent opioid would be more helpful such as oxycodone, methodone or buprenorphine. The difficulty with this is getting a prescription. If you can get to consult one of the well reputed RLS experts you have in the US this would be helpful.
In your favour is that you are suffering pain because of your augmentation.
Other, more accessible medications with little risk of augmentation are gabapentin, (Neurontin), pregabalin (Lyrica) or gabapentin enacarbil (Horizant). However these don't help particularly well with augmentation or withdrawal effects.
Once you've weaned off the DA then these may help or if possible you could continue with an opioid.
I hope this gives you some ideas. I'm afraid that you are in a difficult dilemma. As long as you continue to take pramipexole, it's doubtful if your situation will improve. Withdrawing from it may make things more difficult at first, but if you get through, as I found, you should get significsnt improvement.
Hello Manerva,Thank you so much for your input and help.
I have reduced the Pramepexole to .1mg for one week. I am actually doing better than I was. The minute I took it the feet would start. Now it isn't so bad and I am getting some sleep.
I was also taking Duloxetine (60mg) which I was told to taper off by 20mg weekly and take Wellbrutin at a low dose.
I am also taking Hydrocodone, which I have been taking for a long time.
I am also taking Lyrica at 100mg twice a day. I just started that at 50mg twice a day.
Thank you so much for your concern and advice.
If you don't mind, I would like to continue conversing with you.
Oh good! It sounds as if you're on the right track.
The hydrocodone could help and with time, the pregabalin.
Quite right to switch from duloxetine, which can make RLS worse to wellbutrin, which doesn't.
I'm not quite clear what dose of pramipexole you're taking. You originally mentioned 1.5mg. You now say .1 mg which is 0.1mg and hence 1/15 of what you were taking. This is a massive reduction. I'm assuming you really mean 1.0mg. This is a reduction of 0.5mg.
In which case as the dose is still currently high this is probably OK.
However, be aware that the lower the dose gets, the harder it gets to make further reductions. If this so you may have to reduce in smaller steps e.g. as Madlegs suggests by 0.125mg or even half of that.
Yes, I am on 1.0 mg now and doing fine. I was prescribed the Wellbutrin 75 mg per day. I am to reduce the Duloxetine by 20 mg every two weeks. Does this sound ok. I am concerned because my doctor referred me to a pharmacist specialist to help me and she didn't know what augmentation meant and wanted me to quit the pramepexole if it wasn't helping me.
The pharmacist is apparently ignorant. It's not unusal for health professionals to be ignorant when it comes to augmentation or pramipexole withdrawal , this includes doctors, even neurologists.
It is a good idea to quit pramipexole, but not suddenly and not quickly.
My heart breaks for you. You have been badly let down by your doctors. Manerva has given you excellent advice. You have to get off this poison.
I presume you are over the pond in the USA?
If you tell us where you are we can direct you to the nearest RLS specialist as you will need opioids to get you through the withdrawal from that high dose.
You should also take legal action for the Impulse Control Disorders caused by the dopamine agonists- there have been several class actions in the US.
Stay strong as we can guide you in how to get off the Mirapex and get some control over the severe augmentation.
First, slowly get off the dopamine agonists. Withdrawal is hellish ( I went 3 days with zero sleep/rest) and you are on a high dose so you will need opioids to help.
I understand about the legal action. You have enough to worry about now without the stress of looking into it.
I suggest you keep a detailed diary of your experience on dopamine agonists so far and of your withdrawal process. Take videos of yourself during the jerks and sleeplessness and in a year, when you’re off pramipexole and sleeping better you can use the diary & video evidence if you then decide to join others in the many class actions.
Follow Manerva’s withdrawal schedule and you will get off pramipexole and get your life back.
Not everyone is affected but, for many people who have been taking dopamine agonists at high dose for many years, they damage the dopamine receptors so alpha2delta ligands (pregabalin and Gabapentin and Horizant) do not work as effectively to control RLS. Also, iv iron infusions do not improve our RLS, possibly because of the damage to the receptors. In my case, Gabapentin & pregabalin didn’t help my RLS so I take Oxycontin (25mg a day).
There are many who have full coverage of their RLS even though they were on high doses of Mirapex (pramipexole) for many years.
However, your RLS will be far less intense & should only affect you in the daytime once off Mirapex.
The nearest Centre of Excellence is in Houston. Houston Methodist Neurological Institute. Dr William Ondo is an RLS expert and would be able to get you off dopamine agonists and onto low dose opioids or pregabalin (lyrica).
The nearest support groups to you are in Arizona or Texas.
The email contacts are below. They may know a doctor in New Mexico.
Bonny Lepore, Prescott Valley, AZ rlshopeprescott@rlsgroups.org
Donnie Key, Lufkin, TX
Donnie@rlsgroups.org
Lisa Marie Smith
Brazoria County, TX
lisa@rlsgroups.org
Legal action should be taken against the drug company that makes your DA - so look at the medication pack. You could also bring a negligence claim against the doctors who increased the dose and failed to warn you about Impulse Control issues.
I don’t know much about the legal system in the US, but I’m sure a local law firm could give you advice & consider action on a no win/no fee basis.
Did you see my previous reply? I included emails for local RLS support groups in Arizona & Texas ( there aren’t any in NM as yet). I also included the link for Dr William Ondo in Houston Texas - he’s a top RLS expert and could guide you safely through the withdrawal from Mirapex & will likely prescribe opioids to help.
You can start slowly reducing the Mirapex now before you see an expert.
Stay strong- you will be able to do it and your life will be so much better off Mirapex.
This is a UK website so most of us live in England but we do get a few US visitors.
The US RLS foundation has the information that I have given you but the local groups may have recommendations for someone nearer to you.
There are so few knowledgeable doctors that you may have to consider driving or flying to Houston. I agree that it’s dreadful- here in England there are also very few doctors who specialise in RLS but we’re a much smaller country, so the maximum we would have to travel is 1-200 miles.
There are few on here who will not empathise with your situation - and nobody will think you insane - you document the horrors of augmentation very well.
As you clearly recognise, there are positives to your situation in that if you reduce and ultimately eliminate your dose of pramipexole your impulse control disorder will disappear and the severe symptoms will abate appreciably.
In addition to what has already been suggested, I would suggest that you get a serum ferritin test immediately (make sure to get the actual figure - not just that you are 'normal') and if the figure is below 100 start an iron supplement immediately. There is some evidence to suggest that withdrawing from a dopamine agonist medicine (such as pramipexole) is a little easier when serum ferritin is high.
However, I would anticipate that the withdrawal process will be difficult (particularly if you rush it) and, in your shoes, I would press for an opioid to help while you are going through it. Once you have eliminated the pramipexole and returned to your 'base line' rls you can look at other treatment options.
Optimally you should follow joolsg's suggestion and seek the help of an expert knowledgeable in the treatment of rls.
There are many others on here who have been through this process and come out the other side, wiser and with controlled rls. Keep posting!
I expressed myself badly! I meant, there are hardly any people who wouldn't empathise - as in most people on here would totally understand and sympathise. Very best of luck with your journey to better control of your symptoms. It will be good to hear how you get on.
That’s too low. For RLS it needs to be above 100, preferably 250.
That means you can safely start taking ferrous bisglycinate tablets but only take them every other night. If you take every night, a chemical called Hepcedin will block absorption in the brain where we need it.
Studies have shown levels are raised faster by taking every other night.
You can buy ferrous bisglycinate at most health stores or Amazon.
I hate to be such a pest. I got Iron Ferrous Sulfate - Elemental Iron 65 mg. Is this ok, if not i will get the ferrous bisglycinate tablets you mentioned. How much should I take of whichever you recommend? As you know, I was on 1.5 mg of pramipexole. I went down to 1 mg and had a horrible 18 hours of hell. My entire body jerked and it hurt so bad. At the same time I went down on Cymbalta from 60 mg to 40 mg, as directed by my doctor. I went up to 1.25 mg of the pramipexole still having jerking and unable to sleep, not nearly as bad, but painful.
Hi Josana13. I can't add anything to all the good advice you've been given, but I did want to respond anyway as your post is so clearly one of someone in desperation and I wanted to let you know that we all hear you. I am finding it hard to imagine adding so much pain to the already horrible condition that RLS can be. So many of us will identify on some level with just how awful life becomes with lack of sleep and constant pacing. And the wishing that it would all end somehow. I hope that the suggestions here offer you some hope that things can change. You will always get support from the group here.
Thank you for sharing with us. Posting here may not have been an easy first step towards resolving the RLS but it is a good and positive step. Many of us have experienced a little of what you are going through but perhaps not the whole. I too have had nights when I've been falling asleep as I've been walking round the room only to be jerked awake again. The frustration is just so great and you're desperate for sleep. If my walls were made of wood then there would be a head-shaped hole in them by now.
Manerva, as always, has good advice. It took me a year to reduce from the maximum of Ropinirole, so reduce it slow.
Please do keep us up to date as we are all concerned for you.
Thank you so much for your concern. I don't feel so alone. I don't talk about my situation to family or friends. I have been going at it by myself. My husband of 51 years is extremely supportive.
As I walk around the house back and forth with severe back and leg pain, I ask God why I am still here. My thoughts are about cutting my feet off. Of course I could never do that, but the thought is comforting. The nightmare thought is if I were to cut my feet off and the RLS continues in my legs, I would be devastated, But that would never happen.
I will deal with this and come out at the other end. I don't feel things could get much worse than they are now
I too have asked God "Why me?" and I'm sure that many others have. I don't have an answer but I do remember a story by a lady called Corrie Ten Boom. She was Dutch and incarcerated in Ravensbruck concentration camp in WW2. She wrote the book "The Hiding Place". Having lost her father and sister in the camps she said that all we see just now is the back of the tapestry with the threads going all over the place, but when we get to heaven then we will see the beauty of the finished tapestry. So hang in there!
Hi Josana13. What an awful situation you are in. I'm unable to help in any way but, thankfully, on this wonderful site, there are those who can & they offer more help/consideration than most GP'S. I've been on Ropinirole for longer than I can remember, as with you, I'm on 8mg when I believe the max is 4mg? Told to drop 1mg a week & od be fine! Check in regularly on here, even if you are still experiencing the same thing, you'll realise you're not alone. Whichever part of the world you're in, someone will be there. I often read through peoples questions & problems in the wee small hours because, my tired old legs say "Nope, you're not sleeping"Hope you get some help from a reliable place, who understands as we on here do
My heart goes out to you, how awful. When I was on Pramipexole I took all mine at night. I did not spread the dosage.Really hope you can get relief at some point in the near future.
Thank you so much for your advice as taking the Pramepexole all at once. I reduced it from 1.5 mg to 1 mg and I was taking .50 in the am and .50 in the evening. I will take all of it in the evening.
May God bless you always. Please continue to be in contact with me as I need all the support I can get. I don't discuss my situation with family or friends.
Hello Josana. Just sending you good wishes. What a difficult situation you are in. I feel for you. I have not long managed to wean myself off the pramipexole, and I can assure you, that things will improve when you have been able to do that. I had a back operation a few years ago, but luckily it wasn't at the same time I was augmenting from the dopamine. However I was prescribed Tramadol to help with the back pain and it was also an amazing relief for the RLS. I do hope your doctors will give you some opiates, as I,m sure they will help enormously. Please take the advice of Manerva and Jools, they really know what they are talking about and are a great help to everyone on here. Good luck, take your time and you will get to a better place.
Thank you. I feel optimistic about this. I appreciate your support and advice. It feels good to have people that understand because they have been there or are there. I am talking about my restless feet and lack of sleep. There is zero concern from doctors regarding not sleeping. and people don't understand or empathize. so I never discuss my situation with anyone. I just act as if I am fine. Doctors don't believe or care when I say that Ihave slept 5 hours in five days. All this, is why I am grateful to be honest with you and everyone on this site. I thank you from the bottom of my heart for your concern.
I am so sorry to read about what you are experiencing with augmentation due to being on Sifrol for such a long period of time. I have been through the same experience as you and understand the horrendous withdrawal symptoms.
It took me 2 years to slowly wean off the Sifrol medication and I was taking 3.00mg each night.
Towards the end of the withdrawal process I used 5mg of Endone (oxycodone) to assist me during the last few months.
I also introduced Gabapentin as the plan was to change over to using it to relieve my RLS.
I then heard about Temgesic sublingual 200mcg tablets.
Temgesic is micro dosages of Buprenorphine, an opioid medication.
What ever you decide to do, you will need help with getting off the Sifrol medication.
Finally my doctor prescribed Oxycodone for my back pain. I need surgery which entails two five hour days where they will put screws and pins on my back. I opted for a stimulator implant. The walking because of the RLS is extra horrendous because of the back pain. I am in hopes that the stimulator will help with the pain. I am reducing the Pramipexole slowly and doing well so far. A lot of sweating and shaking but otherwise not too bad yet. Thank you so much for your concern. I don't feel so alone anymore as I have felt the past 20 years. God bless.
It may seem as if you were taking Pramipexole for over 30 years, however you have not.Mirapex, which was the brand name for Pramipexole only came on the market in 1997 which would make it a few months over 23 years.
Joann. I can relate to your shopping and gambling on Mirapex. I was on this drug for over 20 years. I would try and explain my jerks and pains to Drs. They just said up the dosage. After finding this site and learning all about RLS symptoms I decided to get myself off DA s. I had a major Gambling problem had to shop everyday so embarrassing. I weaned myself down like they have told you to do on this site. Took me 6 months to come off Mirapex. I spent 3 days of no sleep hot baths at 415 am. I did it!! I no longer have the urges to gamble or shop. Fewer jerks can ride in a car for more than an hour and half. My mind is clear. I am 71 live in Az USA. We all feel your pain so you are not alone. Now on 100 mg Tramadol. Wishing you the best on your journey to be free of DAs.
Did you say it took you 3 days to get off of pramipexole? I am curently in the bathtub all the time. We have a hot tub, but 104 degrees is not hot enough. It really helps with the pain.
Hello, JoAnn here from the USA. First, I'd like to say that my restless legs are in my feet. I feel like electricity is running through them real fast. Secondly, what helps me a lot is tying an ace bandage around them a little tighter than compression socks. If the restlessness is not too bad, it subsides. For example, in the leg area, don't wrap the ace bandage, tie it. I hope this helps somebody. Blessings from the US of A
There are so many people on this site who are better qualified than I am to answer you and you should take their advice.I am also 72, I have been on Pramipexole for 20 years but I have not suffered like you. Until very recently I have been taking 4x 1,5mg tabs per day. Yes I have had compulsive eating, sleep walking, falling down stairs fire in the kitchen chronic insomnia and so on. The only time it got really bad was when I ran out of pramipexole, then it was bad, really bad. Get yourself some tramadol and get off the Pamipexole. I am down to 3mg after about a month of reducing my dose 1/2 tab every week and I am doing fine )see my other posts)Take the advice from the people on this site. There are some guardian angels hanging out here, Oh, and fire your doctor! The people here know more than he does. He should not have let you suffer like this. I'm sending you good voodoo! From Vancouver Canada.You will get better!
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JoeR. Coming of Pramipexole, RLS, going on Gabapentin Noumed and passing out when I am standing.
Am I doing the right thing?
