Dreading the next three weeks

Hello to everyone,

I saw the doctor at Johns Hopkins....per his orders I will be going cold turkey on Ropinerol tonight, replacing it with Mirapex in a tapering schedule for the next 11 days. Then I go drug free for 12 days, then see him again. The handout he gave me has me really down......it describes the first two drug free days as having"horrendous, severe rebound of RLS symptoms" with absolutely no sleep for 48 hrs, and not much better for the following days. He said I cannot have any sedatives....they are "likely to make the RLS worse or cause problems with balance and thus increase your chances of falling". So I guess you can see why I am filled with anxiety over this.

Please keep your fingers crossed for me, because I really want to come off the Ropinerol. Just didn't realize that "cold turkey" was going to be frozen turkey.

Patmac

71 Replies

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  • Hi Patmac, why do you have to switch to Mirapex first?

    I am VERY concerned about your 12 drug free days. I have read the horror stories and even seen a video on YouTube of a lady doing the same thing under the same doctor. There is actually a post on here first hand from someone who did the same thing.

    There are more humane ways to do the withdrawal but it is obviously your choice to decide which way to go.

    What dose of Ropinerole are you on now?

    I can only hope that you are one of the lucky ones

    Let us know how you go on

    Take care x

  • Thanks for your concern, Pippin. I don't know who else I could see for how to withdraw.......I've been on two mgm of Ropinerol ER. The doc at JH was shaking his head over what and how my primary doc had prescribed. I guess the Mirapex is supposed to "ease" you into withdrawal.

    Will keep you posted......probably write to you in the wee small hours, as I will surely be awake......the doctor told me some patients clean out closets, etc. when they can't sleep!

    Patmac

  • I am so very sorry for your plight, it sounds so really bleak. What is the ratiònal of your Doctor in prescribing this particular course of action, and why? Would it be wise to seek another medical opinion? That is what I would do Just to hear, and explore other options.

  • Thanks, Tupper, for your kind words. From what I gather from others on this site, my doctor has been doing this for many years. He is considered an expert in the field, and there is no one else in my geographic area. I actually feel that my primary doctor has no knowledge of RLS as she started me off on 4mgm of Ropinerol ER, and told me nothing about the medicine or my condition. So, I feel I have no choice other than trying to make it through his program. Thanks for your concern and mention me in your prayers.....

    Patmac

  • That seems like barbaric advice, going cold turkey can't be the best way forward surely. Please take care, I wish you an absolute minimum of symptoms.

  • Patmac if you put into search -----10th day off Mirapex but it was hell

    The post will come up --sorry I can't do links

    I know members will think "why am being so negative and scaring you but this is serious stuff and I have seen the effect this has. I am extremely concerned

    Please think carefully before going into this

    X

  • I have seen the handout from that doctor. It scares the crap out of you ands rightly so. There ARE way better ways to do this, and have NO idea why he ha changed his method....to replacxe one dopamine med with another and then 12 drug free days?! I have had many, many people in my groups go thru this. Cannot emphasize enough that there are much better ways to do this. Dopamne withdrawal is a really awful thing, and I am sure I cannot say anything that will scare you more than that handou he gave you. But, there is DAWS, Dopamine Withdrawal Syndrome. It is likened to withdrawal from, cocaine, and that is a fact. If you really decide to go thru with this, just know that OTHER RLS experts do not do it this way. It is not too late to back out of it. It is the hardest thing you will do, and it takes a long time. We are here to support you,. and pippin and I are not trying to scare you, but I have been thru this with many, many of my groups' members. We will be here for you, that is for sure.

  • A gradual reduction over a good few months is how I came off Gabapentin, but not with a GP monitoring it, my love local Pharmacist helped me work out a reduction Nolan and it worked a treat.

  • What are the other ways to get off of these drugs? I have been taking Mirapex and tried to get off of last fall but could not. One night of no sleep at all was very difficult. I gave up and still taking Mirapex.

  • Angela398 by reducing very ,very slowly and taking a strong painkiller to help. Many find Tramadol helpful. X

  • Thanks

  • If you want to see the full video journal of the woman Pippin is speaking of it is on youtube.....her name is Kay Redmond Jordan.

  • web site to read..... sleepreviewmag.com Search for the article called Allaying Augmentation. It is the most accepted way to get a patient off dopamine meds, and much less torture. Dr. Mark Buchfuhrer is the doctor and I have known him and been mentored by him for 25 years. Just know there are other, better ways to do this.

  • If you guys think that is bad advice you want to come to the UK. One Dr told me I was being punished for a past life and put me on amitryptylene. Even though it states my records that the nights got so bad I started self harming. I would take pipping and night dancers advice. Either either way I wish you well and good luck.

  • I would take their advice every time over a GP who advocates cold turkey for anything.

  • Amitriptyline is poison for people with RLS, 99.9% of us. It is literally the only drug that actually had me considering offing myself. IT is a tricyclic antidepressant, and is not to be used. Also, the SSRI antidepressants will set off or make your RLS worse. Any doctor who prescribes these for a person with RLS probably does not know much about RLS, to be brutally honest. You can go to the RLS UK web site for the list of Drugs to Avoid, or to rlshelp.org and go to the treatment page for the long list of drugs to avoid, that will make RLS worse.

  • I don't want to detract from the advice of Pippins and Nightdancer but just pass on my own experience: I came off 1.5mg mirapexin without the assistance of any back up drugs. My sleep consultant insisted on my titrating down. I don't think she is hugely experienced as she seemed to think if I went slowly enough I wouldn't get the awful withdrawals ... Hollow laugh ...

    It was DREADFUL but it is possible - you can do it and with hindsight it is almost interesting to plumb the depths of just how much torture you can tolerate. Having said that, if I had to do it again I would definitely insist on having opioids such as OxyContin to help and, like the others, I find it hard to see why Johns Hopkins are so antagonistic towards the Buchfuhrer method. They are very experienced but could it be as simple/cynical as them being anxious about a law suit if someone hurt themselves by falling when exhausted and affected by opioids ? Surely not but the explanation they gave you sort of hints at such an explanation.

    Whatever you decide to do GOOD LUCK - you WILL ultimately feel much better to get off the augmentation inducing dopamine agonist.

  • involuntary dancer, it has nothing to do with this doctor worried about lawsuits. He is also the one who did a year long study on using opiates FOR RLS. It is his preferred , torturous method, and has been for years. I know, I have been dealing with him for 25 years and how he treats RLS. I love the opiate study, he proved RLS can be controlled very well with low dose opiates. This withdrawal method is the way he does it and I have a love/hate relationship with his work.

  • Yes; I am pretty sure I know which doctor we are talking about and in fairness he has been a life saver in his work on rls. I have therefore always assumed he has a good reason for insisting on a cold turkey withdrawal from d/as. It's just that I can't, for the life of me, see what it is. Particularly when Dr Buchfuhrer uses opioids so successfully (and humanely). I was therefore drawn to speculate about a cynical motivation ....

  • I know every piece of research he has done. And, yes, he is a leader in the RLS community, but the dopamine withdrawal thing does not need to be done this way, it is his method, and he does not have any deep dark evil plan with any company, and it is not because he will not prescribe opiates, he just did a year long study on opiates for RLS. So, the issue is HIS withdrawal method and replacing one dopamine med with another one, and then 12 drug free days, which is not necessary and is total torture. other than this one thing, I appreciate more than I can say his research projects and studies. BUT, there are more humane ways to do this, and it just is not necessary at all, and makes it much harder than it need to be.

  • I agree with nightdancer and pippins.

    And I was going WHAAAAATT???? when I read your post. A doc from Johns Hopkins, one of the leading groups in RLS research, where lots of very good and relevant research on rls has been done? I am perplexed.

    Very good you asked for advice and goes to show the power of this forum.

    Weird part about the no sedatives. I guess that includes the opiates. What underpinning does he have that those worsen RLS? Have there been studies comparing the same treatment with and without sedatives? And as to the effects of sedatives on your balance... what does he think complete lack of sleep combined with severe, unsedated withdrawal rls will do to you???

    I can go on for for a while, but that doesn’t help you now. I would go with nightdancer’s advice and contact Dr. Buchfuhrer for a second opinion. He is as leading in rls research as the Johns Hopkins group. And don’t hesitate to refer to experience from this forum. My augmentation and withdrawal wasn’t so bad, but so grateful for the tramadol (50 mg evenings only)! I know of Bganim recently, and Joolsg and Nick-the-turk longer ago, who have told and can tell you much more. I have read quite a bit here, but haven’t come to inbalance owing to opiates; gabapentin and pregabaline would be more suspect imho). Nightdancer and Pippins are far more experienced than I and can probably come up with more forum members having gone through DAWS.

    Think twice! And don’t be scared to question this doc’s advice - it is your body.

  • Lotte, the thing is, this doctor is NOT opposed to opiates. He wants them to be the preferred treatment for RLS. You can see his videos and studies, an he did a year long study on opiates to porove that they work for RLS. He is the ONLY leading RLS doctor who uses the 12 drug free day method, and I have NO idea why he wants to replace ropinerole with another dopamine med for the first few days, and THEN go cold turkey for 12 daysa. It takes a lot longer than 12 days, trust me. I know hundreds of people who have gotten off dopamine meds in a much more humane fashion than this "Johns Hopkins" method.

  • Wise and sane words from involuntarydancer too!

  • just so you know, I cannot load private messages right now. My computer is in the shop, hopefully not totally dead, but am on a tablet that does not love this web site. :)

  • I did write you one. No hurry and no worries. It will keep.

  • I have my laptop back. Sent you a message back. Thankfully, it was only the power button on my computer. Phew! I would not be able to do my work for RLS awareness and run my groups without it. :)

  • 👍🏻🙏

  • Patmac I already posted but seems to have disappeared I would advise you to be very cautious and vigilante with mirapex .The side effects can be frightful .it does warn one until very late in the write up and even then says it is rare. I think not.I refused to take it after a few weeks because of its effects and there seems to be a residual linger of them look up Windwalkers post .to see just one persons take on it. Also it had very little improvement on my RLS.

  • I really do not understand what your doctor is thinking in asking you to undertake what can only be described as unsafe practice.

    'Going cold turkey' as you describe is hardly the best way. In fact it is dangerous. Patients are normally weaned off a drug over several days to avoid the obvious risks.

    I cannot imagine what your doctor has in mind by suggesting the above but I would encourage you to seek a second opinion if at all possible.

  • His thinking is that he wants the patient to return to "baseline" RLS symptoms, and it takes weeks, if not months. I have people in my groups that have been weaning down for months, some with opiates, some with no backup meds at all. It does NOT need to be done this way. The weaning should be done VERY slowly, and it should take a long time to do it safely. Mirapex is the same class of meds as Ropinerole, so THAT makes zero sense, too. That is a new thing in his metho.

  • It took me nearly six months from when I took the last dose of mirapexin to achieve my baseline figure. I wondered was I a freak when so many doctors talk of 12 - 14 days but I think it was also to do with me having very low iron levels which gradually rose over the six months.

  • To put it very honestly, 12-14 days is only the start , and those are the exact days, when we have to talk people "off the ledge" so to speak. Many of us here and in other groups have had to be up all night for days with some going through this, and Day 14 is usually always the very WORST day, and it is nowhere near the end of the torture.

  • Is anyone able to do a link to the post by Catz2, the title of the relevant post is ---10th day off Mirapex but it was pure hell getting there.

    I am a total technophobe!

    Thankyou in advance

    X

  • Found it:

    healthunlocked.com/rlsuk/po....

    Hope it gets imported as a link.

    Otherwise, search for "mirapex hell" (exclude quotation marks) and bingo.

  • I have just re-read that post and all the comments and what poor Catz went through. The link works :)

  • I just re-read it, too. 100 straight hours with no sleep! That is really close to malpractice.

  • Thankyou for the link LotteM x

  • I completely agree with Pippins and Nightdancer on all they have said. I have seen that handout too and just reading what he says on what you will go through would be enough to send me running in a different direction. Every group including this one that i belong too, we see every day some one who is going through Augmentation, they have taken a opiate mostly Tramadol, to help with the withdrawals, to me that is the best way to wean off a dopamine med and wean very slowly.

  • I read the post by Cats2 and most replies too. And I read here from you that she (?) was definitely not alone. So what the heck is Dr E thinking he is doing? You start wondering, is this the “war on opiates” that seems to be going on in the US?

    And what is the plan of Dr E after this period of cold turkey? Nothing? More iron? (doesn’t help everybody and is a slow process anyway) Gabapentin or pregabalin? Or??? And what on earth is his rationale and underpinning????

    Apparently this procedure has helped (quite) some people, otherwise he would have been forced to stop after doing this for several years, you would think.

    OK. I’ll stop ranting. That is no use.

    One final constructive question, though. Can the US rls foundation provide names of neurologists who are willing to prescribe sedatives/opiates when needed? @nightdancer - do you know?

  • He actually prefers people to take opiates so that is not his issue. He seems to after the cold turkey, give people a iron infusion, then the patient is given a plan for further meds to take, in Kay Redmond Jordons case she went on to take Oxycodone. His idea is you start from the beginning with no meds for RLS in your system. A very harsh idea, and seems to most of us that it can be done with a opiate to start with.

    As for your last question, i think finding a GP or neurologist who will give opiates comes alot from people who recommend their own. But i will relay that to Nightdancer.

  • The US RLS Foundation, I can promise you, will NOT do that for you. Don't make me go into details about it, but they are the last people I would ask that question of. There is a webinar on Oct 11th with Dr. Mark Buchfuhrer, who does do this the humane way with opiates always. you can see how to sign up for this on the FB page for the RLSF from the US. That would be the ONLY reason I would ever go to that page. He is located in So California, about 60 miles from LAX, and is the BEST practicing RLS doctor in the business. His web site is rlshelp.org and you can email and ask him about opiates and augmentation and dopamine withdrawal. Also, the webinar is about "general RLS questions" See the RLS Foundation's FB page for details. It is about the only useful thing on there, trust me. Their web site has a members only section, which means you have to pay to get to get to a lot of information, the main reason I do not hand out their web site. It has been a 25 year deal with them, and now the new staff is impossible to deal with. i am just being brutally honest here. It is not like dealing with the UK Foundation, they actually listen and respond. :) For people in the UK, the UK Foundation needs donations, and it is not that much to become a member. I am in the US, so have not done that, but we have lots of UKers here, and they are YOUR foundation, and all info on their web site is free for the looking. They do need donations or more members. This is their group, and if you have been helped at all here, it is because of them and I am one who never calls for donations to the other one, they do enough of that on their own. But, so consider even a small donation or a membership to the UK Foundation. :) Just my little rant for the day. They are , of course, non profit, and money helps to get the word out. And, they need more actual members.

  • good luck, i hope it helps, stay safe and monitor any withdrawal symptoms. stay safe

  • Unlike all of the other replies I can sort of see what the plan is and it almost doesn't appear to be actually cold turkey. If you are replacing the ropinol with the mirapex and then "weaning" down from the mirapex-that's not really cold turkey. Yes, you will have discomfort but in the long run you will be off those augmenting type drugs. I have all the faith in the world in Dr. Early and I'm sure that when you see him again that he will have a satisfactory plan in place for you. Good luck!

  • You have to go 12 days without any meds of any kind so yes that is cold turkey after you have weaned off the mirapex.

  • it is essentially the same, and replacinmg one dopamine med with another onew, and then 12 drug free days IS cold turkey. It takes months sometimes to wean off a dopamine med, not days. I know his method inside and out, donje suicide watches on here and in my groups more timnes than I care to say. This is just plain torture, plain and simple, and it needn't be that way at all. After 25 years of managing RLS groups and having severe RLS myself which is controlled by opiates, this method is absolutely not necessary.

  • In the context of coming off a Dopamine agonists the term cold turkey applies to stopping the Dopamine Agonist without a back up medx

  • Thanks to Elisse and Nightdancer for enlightening info re the opiates. Has anyone any idea of why the switch from ropinirole to pramipexole (Mirapex)? And yes, from my oen experience on even a low dose, and others on much higher doses, getting rid of the aftereffects of the DA’s take quite a bit longer than 12 days. I can understand waiting until full stop when weaning down, but why the 12 drugless days? Wish I could simply phone and ask. I am curious. Also, if we want to advise well here, we should try and understand.

  • The poster should have been told why the switch from ropinerole to pramipexole, so maybe they can tell us. I have to say, i wouldnt be advising anyone to try this method. I always stick to i know what is best in my opinion on how you wean off a DA in a more humane way. Actually that answer to the 12 days drugless might be on Kay's videos.

  • Sorry, Dr. E. did not tell me the reason for the Mirapex. I am to see him on Oct. 17.......guess I will learn the rest of the plan then.

    Patmac

  • Keep us informed on how its going for you. Regardless what we all have said, we are all still here for you.

  • Whatever happens will be easier knowing that I have support from all of you!

    Patmac

  • You can 100 % rely on our support Patmac x

  • You can message him and he will answer you within 2 days (usually less.) did you sign up for My Chart at Hopkins?

  • Thanks, Marsha......yes, I'm signed up. Do you message him if things are getting really bad, or for other reasons? I don't want to "bug" him.

  • You can message him about anything. He's very good about answering. You can bug him.

  • Good to know.....thanks again!

  • I don't know why the site changed my name! I've been Grammie 12 since I joined this group (although my name is Marsha.)

  • Just gone cold turkey from Ropinirole and it isn't very nice. New medication of Pregabalin not helping at all. Probably because of coming of Ropinirole.

  • Dear Patmac. I don't think I could do what y are going to do. I have reduced my doses of Pramipexole by1/3 and that was hard. My thoughts and prayers are for you. Hang in there. Hugs

  • I'm not sure if I can do it!! I'm off the Ropinerol and am now tapering the Pramipexole....no problems so far, but I am very apprehensive about the days to come. Thanks so much for your support....and especially the hugs!😘

    Patmac

  • Hi patmac, glad you are letting us know how its going. No problems so far cause you have just change from one dopamine med to another, so still getting the dopamine at the moment. How long before you finish the Pramipexole. ? Hugs will help you. x And no one is forcing you to do this, remember that. If it gets so you just cant cope especially those 10 days, then dont keep with the torture. You know from our comments there is another way to do it. :)

  • Hi, Elise,

    Good to hear from you! My last dose of Pramipexole is October 5. I can't see how I can do this another way......Dr. B. is on the other side of the country and I wouldn't know how to "fire" my current doctor. Needless to say, there is no source for any opiates that doesn't land me in the local detention center!

    Please keep sending the hugs....especially after the 11th!

    Patmac

  • Do you have a regular doctor..? Or one that wouldnt for the life of them prescribe any opiates for you. ? Hugs coming your way.

  • My regular doctor is the one who prescribed 4 mgm of Ropinerol to start with....plus it was the extended release form. Both of those things had Dr. E. shaking his head and frowning! The "opioids crisis" here in the States is such that to ask for them gets you nothing but a disapproving look and a refusal! So, make those extra strength hugs...😘

    Patmac

  • It sounds awful! I am rooting for you! I've read that Miraplex is as bad as Roperinole. After 11 days will you be without any medication?

  • Yes...after 11 days (Oct.5) , I am totally on my own. And I can use all the rooters I can get.....thanks!

    Patmac

  • Good that at least that you aren't having any problems weaning down from the Mirapex. I will remember October 5th as it's my daughters birthday. Keep in touch x

  • Good luck, Patmac! Thinking of you! Rooting for you!

    How long will this go on for?

  • All of you are wonderful, and I thank each of you for the kind thoughts and support! As to how long this will go on......I will see the doctor again on the 17th. I know he wants 12 days drug free, but have no idea what comes next (sure hope he does!😜).

    Pippin....best wishes to your daughter!

    Patmac

  • I'm not as knowledgeable as most of the people on this site, but I was on 4mg of ropinerole a few years ago and coming off it was absolute hell!!! I was quite literally sucidale at the time. I got through it eventually, but I promise you it is not something you can come off cold turkey!!! I used pregabalin, but it took weeks and weeks before i could substitute one for the other. Please listen to the people on this thread as they are far more informed then any doctor!!! I wish you the all the best: k xx

  • Hi, Katie! Luckily, when my regular doctor ordered 4mgm I had really bad dizziness the next AM.....I cut it to 2mgm, immediately. So now I’ll be trying to come off of 2mgm......which will probably be pretty hellish as well! I’ve been taking the Mirapex the rls doctor ordered as a stopgap and doing really well....however, I’m tapering off of it and have begun having some symptoms. I’m afraid this is just a taste of what is to come.

    Thanks for your good wishes....I appreciate them, very much.

    Patmac

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