I have ALMOST transitioned off pramipexole with severe DAWS. I had been taking 3 mg every day. I believe this to be an unusual high dose but my neurologist ( not the doctor that ordered the high dose of pramipexole) says the maximum dose for any patient is the highest dose for the patient without causing symptoms without regard to what is stated as the maximum dose. I don't agree with his statement at all but that is another long story. As I was suffering with DAWS he ordered a MRI probably because of my withdrawal symptoms which he has yet to recognize as withdrawal. In thr meantime I have been transitioning to gabepentin 300 mg in the morning and 300 mg in the afternoon and 600 mg in the evening. He mentioned on my last visit that he doesn't think the Gabepentin would be the drug that I should stay on but recommended benzodiazepines. After looking them up they sound as if they might be addictive too. He also finally ordered the right Ferritin test after ordering regular iron. Meaning I had to have 2 lab draws. I am still awaiting the results of those. I am at a complete loss of what to think about my neurologist but don't at the present time have another to consider. Help!
Medications for RLS recommendations - Restless Legs Syn...
Medications for RLS recommendations
Good evening, Aujamw, and sorry to hear of your DAWS nightmare.
I am not a doctor. However, having previously taken pramipexole for 20+ years, having taken other RLS medicines that you mentioned (gabapentin; and one or more benzodiazepines), and having this past year survived DAWS Hell, I may be able to offer some insights.
First, I understand that the recommended "maximum daily dose" of pramipexole for RLS is much less than the maximum daily dose for other disorders (e.g., Parkinson's Disease). The dose that you mentioned sounds way beyond that which customarily is prescribed for RLS.
My daily dose had been much less than yours (generally ~0.65 mg daily, in divided doses). Still, the titration schedule needs to be closely monitored and adjusted as necessary in consultation with a qualified health care provider. If your experience is anything like mine, you will find that the last reduction may be the most difficult and may produce the greatest discomfort. You may wish to prepare in advance for this eventuality by, e.g., discussing with your health care provider another medication to take during this most difficult time.
Second, by personal experience, during the period that one is undergoing DAWS, other medicines traditionally prescribed for RLS may not work. Thus, during my agony, neither Tramadol nor Vicodin offered any relief. Something else may be appropriate.
Third--you didn't mention whether or not you had augmented on pramipexole. Even if you had not experienced DAWS Hell, some "sleep experts" have suggested that, once a person has augmented on a dopamine agonist (pramipexole), the sufferer's brain may become "permanently" rewired so that some of the medicines that otherwise might have helped RLS. Thankfully, in my case "permanent" meant only about one year.
Fourth: I found pregabalin preferable to gabapentin because it had less side effects (and now appears to be more favored by the medical community). Though benzodiazepines eased my discomfort, I abandoned same as they made me feel drugged day-long .
Regrettably, I cannot offer any suggestion as to how to ease your current suffering--other than to discuss with a competent, knowledgeable health care provider the potential utility of methadone or similar if you are willing to consider taking same. As I've mentioned elsewhere, in my neck of the woods, no doctor would prescribe methadone for me unless I signed a Pain Management Plan which I refused to do. And rightfully or wrongfully, there was in my mind the perceived stigma of "methadone."
If there is any solace, it would be that the "rewiring" of my brain did produce some positive effects. With pramipexole, augmentation, and DAWS Hell all behind me, I have found that my late morning, afternoon and early morning RLS now is much less than it had been.
Be well.
I have left some vital information out and YES I have augmented on pramipexole after 8 years and telling my PMD that my symptoms were worse and earlier in the day, she only increased my dose more and more! Until she finally sent me for an EMG because she thought my symptoms were from neuropathy and when I got a negative result sent me to a neurologist. The only thing I can thank my neurologist for is his diagnosis of augmentation. Otherwise he seems to not recognize withdrawal from pramipexole he tries to decrease my my meds by .5 mg at a time every 3 or 4 days. I was in definite hell! I tried to tell him that was way too fast thanks to the information on this website and thanks to those kind enough to help me! Needless to say I don't have many alternatives other than to choose another doctor at random for recommendations! This site has been a lifesaver for me! I really don't want to go on benzodiazepines, but don't know other options I'm afraid! Help! I'm
Hi, again, Aujamw, and thanks for additional info. I ran into similar ignorance.
I first was prescribed Mirapex when it was only available as a Brand name medicine. "Coincidentally," when it went generic, it no longer worked. Instead of suggesting augmentation, my then "sleep expert" neurologist suggested that its diminishing efficacy might be due to the inert ingredients that affected the bioavailability of the pramipexole. Silly me! I ended up special-ordering and paying $$ for special order of Mirapex direct from Boehringer Ingelheim in Germany (I live in USA).
My next "sleep expert" neurologist continued prescribing pramipexole years after it had become known that long-term use was likely to lead to augmentation. When I told her about its diminishing efficacy, she tersely suggested that I "take more."
Do discuss with your doctor. However, the available literature that I have read on addictions generally (and common sense), suggests that a reduction of a drug taken for long-term should not be on a fixed amount basis, but rather on a percentage basis.
While a reduction of 0.5 mg might be fine for a person taking 3.0 mg (reduction of 1/6), it may not be for that same person who already had titrated down to 1.0 mg (1/2). You may wish to discuss with your doctor reducing on a percentage basis. For me, even the final reduction of only 0.125 mg pramipexole (from an initial starting point of ~0.65 mg pramipexole) was horrific. Given that the last reduction may be the worst, the thought of a drop of 0.5 mg of pramipexole (in your case, 1/2 of the total dose of 1.0 mg just several days previous) strikes me as a disaster in the making.
Many others who comment here have suffered worse than I. But I suffered considerably, and at length. Some days, I prayed in vain for even an hour's sleep to break the torment. And but for the need to buy food, to retrieve mail, or to tend to my car, I sometimes would remain for a day or more curled in a fetal position laying on my floor, writhing in agony. It was, indeed, Hell.
Be well.
As RLSIconoclast says, stay on the gabapentin as it will not work well until you have been off the pramipexole for a few weeks and your symptoms settle. I would not take benzodiazepines unless you find you need them for sleep and then don't take clonazepam as it has a 40 hour half-life so can make you sleepy the next day. Instead take ativan or ambien. Yes they are addictive but can be stopped without withdrawal effects if you do so slowly, and if you find you need them, so what if they are addictive. As far as the difference between pregabalin and gabapentin, one does not have more side effects than the other and in fact they are the same although some people find the side effects on one do not affect them on the other.
Try to get your doctor to prescribe a low-dose opioid to help with the withdrawal. Others will suggest kratom and I am sure TeddiJ will jump in here to tell you more.
3mg of Pramipexole is a Parkinson's dose and way too high for RLS. Your neurologist clearly doesn't understand what drives augmentation and DAWS. Dr. Winkelman explains that most neurologists are happy with high doses of Pramipexole because they mainly treat Parkinson's and do not see the devastation that overprescription causes to RLS patients.I suggest you consider finding a new neurologist who knows about augmentation and DAWS and the Mayo algorithm. The US foundation has lists of US experts and help groups so you should be able to find another quickly. Join rls.org.
What dose are you now taking?.
Experts recommend taking at least a year to get down from negligently high doses like 3mg of Pramipexole. So your new neurologist is pushing you to too quickly. You should reduce by half a 0.125 pill every 2 weeks. 1mg drop should take 16 weeks. 3mg drop should take 48 weeks. Cannabis or a low dose opioid can be prescribed to deal with the withdrawal symptoms that happen with each drop.
So the new neurologist may recognise augmentation but DAWS is very real and there are several research papers describing it fully.
Gabapentin won't help much while you're reducing Pramipexole but once through withdrawal, will work better for you thank benzodiazepenes but when you're off Pramipexole you should switch to taking it in the evening and before bed as your daytime RLS will settle and gabapentin will work better at night.
You're not alone..
Poor treatment from neurologists is common. Dr Winkelman wrote an article about it. Maybe you could see him via video medicine? He's at Massachussetts General Hospital. Or Dr. Buchfuhrer in California?
sleepreviewmag.com/sleep-tr...
Thank you so much for your advice Joolsg. Do you live in the UK? I lived in England many years ago for 3 years and enjoyed living there very much. I don't understand what you were saying about benzodiazepines. Could you please clarify? I am currently on 0.125mg of pramipexole. I believe I have had a miserable time reducing due to the high dose I was on and much too fast. have read that many people take years to reduce. I am frustrated that I am paying to go to a neurologist that doesn't understand DAWS! I wish that for one day I could put his body through what I have had to endure and he would understand! I am getting ready to go on a one month vacation in about 5 weeks and want to get things a little under control before o go! My life has been turned upside down the last 3 months. I just got the results from my iron studies on my patient portal today but did not talk to my doctor. I am afraid actually that he will tell me it is all normal. Here are my results. I need help interpreting them. They are: Ferritin 8.5ng/mL, iron level 45 mcg/dL, TIBC 393mcg/dL Percent Sat 11%
You need an iron infusion as soon as possible. 8.5 ferritin & 11% sat are way too low. Ferritin needs to be above 100, preferably 200. Oron above 60.
I'm in the UK. This is a UK helpsite run by RLSUK.
You should try to see an RLS expert asap and they will prescribe an iron infusion. Getting your ferritin from 8 to 100 would take too long with oral meds but you I see your doctor has prescribed iron pills. Taking at night only, and every other day usually increases levels faster, but as your levels are so low, take them as directed until you get an infusion of Ferrinject.
Reduction from 3mg to 0.125 of Pramipexole in under 3 months will have been traumatic.
The worst happens after you drop the last dose as you have 2 weeks of no sleep ( or very little) and all over body severe jerks.
You may have to stick at 0.125 and keep on the gabapentin so you can take your vacation. It takes 3 to 4 weeks to be effective but often the Pramipexole withdrawal still breaks through. But it might calm down your body and RLS enough to allow you to enjoy.your vacation.
Benzodiazepenes aren't generally very effective for RLS. Especially after dopamine receptors are damaged after years on Pramipexole. They usually aren't strong enough. A few people have success with clonazepam but it has a long half life and causes daytime drowsiness. Tolerance happens quickly.
Print off the Mayo algorithm and show to your doctors to get the iron infusion.
You may also need a low dose opioid like tramadol, codeine or oxycodone to get through the worsening RLS caused by withdrawals from Pramipexole.and to enjoy your vacation.
You should also report DAWS and the augmentation via the FDA site so authorities realise the extent of dopaminergic augmentation and stop prescribing these drugs.
You could also consider legal action. Your holiday may be ruined by withdrawals and 3mg is way above the maximum FDA limit for RLS. There have been many successful class actions in the USA.
I really hope you get help soon.
I know a few names of good RLS doctors in the USA. RLS.ORG will have better information but you need to join. It's $35 but excellent value as you can watch webinars by top US experts. Where are you?
It's now $40 both for US residents and international ones.
i am a loooonnnggg time sufferer & have been on numerous meds. I was seeing a renowned Dr. here in the US 20 yrs ago when I was first diagnosed, but he moved to Tennessee 🥲. I have suffered as far back that I can remember since I was 6 years old. I have since seen a pulmonologist and now with the same neurologist for about 8 years or so.
I am trying to wean off prampexerole (was on 1.5, now on 0.65. This was all my own request after reading here. I am also taking gabapentin (600mg) and going to increase after off P, whenever that may be. Prior in my suffereing I was at one point on 2400 mg of gabapentin per night. Dr seems to care, but I feel we may have run our course. He did an at home study & he said I have some slight apnea & wanted me to wear a big box on my back (so I won’t turn over) and get a Cpap machine & try a mouth guard. There’s NO WAY I could survive w rls & any of those suggestions. I’d love to try a new dr who’s is up on RLS & understands the struggles. I live in monmouth county,NJ.
I am dying from RLS. It’s killing me because I get no sleep & am soooo exhausted during the day. I take Xarelto for a blood disorder & 50mg of Wellbutrin. I cannot deal w this. Do you have any suggestions for NJ drs in my area? I’m also not familiar with s government list… and suggestions would be greatly appreciated.
I thk I may copy my reply to you as a main post… maybe?
Sadly this is a UK site. I know a few doctors in the USA from our members from across the pond.That's why it's better to join rls.org to find help groups and doctors near you.
I only know of Dr Glen Brooks in New York city at the ketamine centre.
Dr Winkelman is at Massachussetts General Hospital in Boston and Dr Earley is at Johns Hopkins in Baltimore.
Joining the US foundation is worth every penny. You get access to webinars with top experts and quarterly magazines with great articles.
Many with RLS also have sleep apnoea and CPAP machines really help. They take a while to get used to but most say their sleep really improves. Oxygen helps transport iron and brain iron helps RLS.
Well done for getting down to 0.65 of Pramipexole. Don't give up because once you're off it, that terrible intense RLS will reduce and the gabapentin will start to help about 2 weeks after the last dose of Pramipexole.
That is great that you are down to .65 mg. Keep reducing by .125 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. 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. But in the long run, you will be glad you came off it.The gabapentin won't be fully effective until you are off pramipexole for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. Since you will 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. Most of the side effects of gabapentin 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 take it at least 3 hours before or after taking gabapentin or pregabalin as it will interfere with the absorption of them. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. 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...
I am in the US in Iowa which is in central USA. I have had so much frustration with my doctor but at this point I don't even know anyone in my area that is knowledgeable. when I google RLS experts in my area I get my family doctor which is the one that prescribed 3 mg pramipexole. I have been told I should report her and at this time I am so frustrated with both my family doctor and the neurologist. He clearly doesn't have l knowledge of RLS and when I mention withdrawal of pramipexole he looks at me like I am from outer space. However he has agreed that I should reduce more slowly as I insisted . When my symptoms were driving me crazy I went up 0.125 mg because my symptoms were intolerable all times of the day. I moved my gabepentin to late afternoon to 600 mg and 4 hours later another 600 and am doing better. So with upping my pramipexole a little and taking the Gabepentjn I am doing some better at least sleeping better. I get up in the morning and my legs are weak. Sadly my doctor prescribed iron tablets twice a day for my very low Ferritin.which contradicts everything I have read on Mayo Clinic. They recommend no more than once a day and often every other day. I don't know what benefit twice a day will do for me but then again this is my doctors advice. If I didn't need him to prescribe my medications I feel I could make better decisions on my own about what to do! I guess when inhave my iron retested and it is still low maybe he will see I need an iron infusion. Or by then I may have another doctor I am not happy with his advice to move me next to Benzodiazepenes as I read they don't really work only for mild symptoms. . I am trying to find a stable ground to get me to my vacation and then dealing with reducing further if I can. I really was intent on coming off the pramipexole before my vacation but I think i already suffered one night of those terrible body jerks when my doctor told me to reduce down .5mg to completely off and I had one night of hell. I can't imagine more days like that. I think being on 3 mg on pramipexole severely messed up my body. I have not felt good the whole last 3 months with irritability, unstable emotions, etc, my husband and family don't understand. Thanks for all your advice. I still don't really know what meds I should go on instead of benzodiazepines. I am reading it costs $60 for thr RLS membership but probably will join. Thanks again.
Sadly, the mid west doesn't have many experts. It's $40 to join rls.org but worth it.
You would definitely benefit from an iron infusion. You can take the iron as directed for now but the Mayo algorithm is correct and studies have shown iron levels rise more quickly if taken once every other night. Hepcedin blocks iron absorption if taken more than every other night.
Definitely hold off reducing Pramipexole further unt il after your vacation as withdrawal is hell and lasts weeks.
Hopefully by joining rls.org you will find a knowledgeable doctor who can prescribe an iron infusion and low dose opioids to get you through each reduction in Pramipexole.
Most people on here go through withdrawal slowly and without a neurologist. It can be done. Cannabis really helps so if it's legal in your state, get hold of some.
I am off pramipexole now after my vacation and on day 4 after being off. Hoe long can expect until I am feeling less withdrawal? Suffering.
It takes at least a month after your last dose of Pramipexole before the RLS settles.Did your Doctor prescribe any low dose opioids to settle the withdrawals? Did you manage to get medical cannabis?
What is the next step? Iron infusions?
Most RLS patients do need an alternative medication once off prescription.
Pregabalin or gabapentin are the usual choice. However, they take 3 weeks to be fully effective. Have a look at the Mayo algorithm meds table to see average dose and timings.
Hi Aujamw, I know how you feel as I went through the same process last year. It was HELL.
I had been on Pramipexole for 10 years up to .250 Augmented & had to withdraw. Suffered DAWS which NO-ONE diagnosed.
Tried the gamut of medications including Gabapentin. Nothing helped. I am very sensitive to meds so the side effects were terrible for me. I can’t tolerate opioids, particularly strong ones.
I’ve been told that once you’ve augmented Gabapentin & Pregabalin may not work.
The good news is that I have pretty much recovered from the augmentation & withdrawal.
Manage daily with paracetamol, CBD oil, Advil, and occasionally very low dose of Sifrol or a small amount of codeine.
I hope you find some relief.
I can offer a little advice on Diazapam.I took it for a couple of years a long time ago when my RLS was mild. It helped me to get to sleep .However you should know that it doesn't settle leg symptoms. So when my symptoms became severe I had to change meds. Also tolerance builds really quickly.Good luck
You may mot need any med if you can avoid refined carbs and regined seed ois as in processed foods. These 'foods' cause systemic inflammation which affects the nerves to cause hypersensitivity and hence RLS. Taking Vitamin D (up to 20,000 iu in winter) will help to relieve this inflammation.
Hi Eryl,
Is there data that supports your recommended dose of Vitamin D? That seems quite high and I generally am leery of taking higher than recommended does. of Vitamins.
Jim
That is a similar dose that you're likely to ge[ by sunbathing for half an hour at mid day in Summer so it can't be dangerous. The rda is based on the dose which would prevent rickets and was set before they realised that vitamin D had other beneficial effects.
This video is about lowering blood pressure but suggests 20,000 as a safe dose. youtu.be/HECyQMin19U
Sorry to interrupt, but would someone be so kind to explain me what DAWS is? As I just got gabapentin yesterday from my doc (i want to change from pramipexole to gabapentin) I‘m reading the posts about this topic.
Dopamine Agonist Withdrawal Syndrome. There are numerous posts about it on this forum. You can look them up using the search function (icon at top right).
Thank you so much!
If you do want names of doctors knowledgeable about RLS near you, let me know and where you live and I may be able to find some names for you.
i replied to another member above on this thread asking about dr name (& going thru my journey (in a nutshell), and am wondering if you have any dr suggestions for me. I live in monmouth county, NJ.
Thanks!
Unfortunately I don't. The nearest one is in Reading PA but they wouldn't be able to prescribe medicines.
What is DAWS? What do you experience?I was on 900mg Gabapentin. Only when I felt rls come on. Not taking earlier in the day. I found one 900mg hit would rid me of rls in 30-45 mins. Only thing with Gabapentin was it totally destroyed my short term memory badly. So doctor put me on pramiprexole. That seems to work on a low dose. However, I am going to try and get off those too and see if rls returns. I used to get rls in legs and arms quite awfully. I certainly know where you are coming from.
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