Is your DA causing augmentation?

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

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legsbestill
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Re: Is your DA causing augmentation?

Postby legsbestill » Fri Feb 10, 2017 12:07 am

It is really awful to suffer from severe RLS such as yours. Relaxis can be very helpful BUT you should focus initially on cutting down on mirapexin and ultimately discontinuing it. Relaxis is unlikely to help much with your symptoms while you are augmented on Mirapexin, if at all, and particularly with the very much worse symptoms you will experience when you reduce your dose. Your only options during this period is to resign yourself to a period during which you will get practically no sleep at all or get a prescription for strong opiates to get you through. Once you have eliminated Mirapexin and returned to your 'base line' symptoms, then you can considering eliminating the opiates and at that stage you could consider Relaxis. You should also have your ferritin serum levels checked (a blood test). Increasing iron levels often helps with symptoms (although, again, not during the withdrawal period).

ViewsAskew
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Re: Is your DA causing augmentation?

Postby ViewsAskew » Fri Feb 10, 2017 3:15 am

Yup, what legsbestill said! My heart goes out to you, sandy9356 - I've been where you are and it was so miserable. Not sure why the neuro has you still using a dopaminergic drug, though. You shouldn't, most likely, use one since you have augmented before.What drugs does the neuro want you to try again?
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Is your DA causing augmentation?

Postby badnights » Sat Feb 11, 2017 10:35 am

sandy9356: Poor you! I wonder who has told you that you have tried pretty much all the meds? There is a whole class of medications that is remarkably effective for WED/RLS, and never causes augmentation, and that is the opioid class. There is a potential for abuse, hyped out of proportion recently, but it seems to be very low in WED/RLS patients. Some studies have shown that we actually have less of our own endogenous opioids in certain parts of our brains, which may account for the beneficial effect on us of taking oral opioids.

I am curious what dose of pramipexole/Mirapex you are on. Is it above the newer recommended daily maximum for WED/RLS, which is 0.25 mg pramipexole/Mirapex? Parkinson's patients are routinely given much higher doses than this, but some neurologists fail to recognize that the medication is used differently in WED/RLS - that a phenomenon called augmentation can happen, and that it's more like to happen the higher the dopaminergic dose is.

After a WED/RLS patient has augmented, they typically will augment again on dopaminergic medications unless something big changes. One big thing is your ferritin level. If it's lower than your personal "best" level, you may augment quickly on dopamine agonists or have more severe symptoms. Your personal best level might be much higher than the standard "normal" level given by labs, though - normal for normal people is 20. WED/RLS patients are recommended to have at least 75, and some specialists say 100. And unpublished work, spoken of in seminars hosted by the RLS Foundation, suggests that many RLS/WED patients have their own personal best ferrtin level that has to be maintained to keep symptoms at bay, and this level may be in the 200's or perhaps even higher for some people.

I agree with legsbe that you will need to get over your augmentation in order to give Relaxis - or any other medication - a fair trial. What you can expect is that your symptoms, already aggravated by augmentation, will become even worse as you withdraw from the dopaminergic drug. Once the withdrawal is complete, though, your symptoms should be better than your augmented state was. Getting over dopaminergic-drug withdrawal without an opioid can be a brutal experience. Best you don't plan to work for the first 5 days of it, because you may not sleep more than half an hour a night. But by day 3 you should get some sleep, and by day 5 you should be able to smell the end. The first 5 days are the roughest, but if you don't expect anything of yourself during that time, you should be able to bear it.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
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sandy9356
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Re: Is your DA causing augmentation?

Postby sandy9356 » Sun Feb 12, 2017 7:14 am

Thank you so much for all of your comments. I am currently on ferritin but my level is only at 30. There has not been much focus on my iron level which concerns me. I have written to the doctor and asked for a medication change. It is 2:00 a.m. and I am barely able to type due to my leg movements. In your opinion, do I need to withdraw my the mirapex before starting a new drug? I have clonazepam (which I rarely take) which may get me through some of the withdrawal. Is there a suggested best medicine for severe RLS. I feel at this point, I am going to need to make the recommendation to the doctor. I forgot to mention that I am on 1 mg of Mirapex 3 times per day.

Again, such a relief to find this group and actually know that others suffer as I do.

ViewsAskew
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Re: Is your DA causing augmentation?

Postby ViewsAskew » Sun Feb 12, 2017 8:03 am

Ouch - no wonder you are having trouble. That is a very hefty amount of pramipexole to take. About 3 years ago, some of the premier RLS experts agreed that the max dose of pramipexole is .25 mg.

Clonazepam, unfortunately, will likely not help you.

There is pages and pages written about augmentation here - not trying to duck helping you, just that you can likely get so much more info from what is here than I could write in a few paragraphs. Also, if you can afford it, The Clinical Management Of Restless legs Syndrome, Edition2, written by Lee, Buchfuhfer, and others, is a book many of us have. It discusses augmentation in detail and can be used with your doctor.

There is a paper link in badnight's signature (a post of hers is before yours) that is immensely helpful. Try that first. If you want, do some poking around in posts - some people like to, some do not.

Then see what questions you have - you likely will have different ones.

And, so glad we are here to help!
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Is your DA causing augmentation?

Postby badnights » Sun Feb 12, 2017 8:16 am

sandy... I felt a stab of dread when I read you are on 3 mg daily of Mirapex. You can't come off that easily and shouldn't do it without a knowledgeable doctor in your corner. Are you anywhere near a Quality Care Center? Can you hunt around for a neurologist who knows about augmented RLS/WED, or do you think your current neuro would respond positively if you brought him/her some information on augmentation?

First - arm yourself with information. The more you understand yourself, the better you can guide your doctor, or guide your search for a new one. Download the Foundation's brochure, the RLS Medical Bulletin - you have to be a member, but it's worth every penny of the (28$? I forget - something like that). And if you can't afford it, you can request a free membership for people in need. The brochure is at https://www.rls.org/member-portal/publications , in the bottommost section called Information for
Healthcare Providers.

There are also three separate pamphlets on augmentation, one of which is free to non-members, the other two require you to be a member to download. If you read all of these, plus the Medical Bulletin - at least the parts on severe refractory RLS and augmentation - you will begin to understand what you're facing and what you need to do.

Also download "Medications for RLS" and "Understanding Iron and RLS". The first one will list the main classes of medications used to treat WED/RLS, which are dopamine agonists, opioids, and alpha-2-delta ligands (a type of anti-convulsant). Clonazepam is a benzodiazepene which has been used for WED, and some people benefit from its use but a lot us just get groggy and have to walk off the RLS with a groggy brain, just makes things worse.

The iron brochure will help you and your doctor understand why your ferritin level has to get over 30, and why you are augmenting .. . taking a dopamine agonist like Mirapex is likely to cause augmentation when ferritin levels are under 100. A lot of doctors don't know this.

There are a number of publications you can download by following the link under my name under every post I write. Some of these can substitute for the Foundation brochures, but nothing can really replace them. Anyway, the link in my signature line takes you to a page on which I've made links to a number of resources on augmentation, and the iron connection in WED/RLS. You should download and read Buchfuhrer's 2012 paper on treatment of RLS .He talks about limiting Mirapex to a daily maximum of 0.25 mg (you are 12 times over that). Older advice is to limit Mirapex to 1 mg (you are still 3 times over that). Many neurologists however, treat WED/RLS patients like Parkinson's patients, and prescribe ever-increasing amounts of this medication in ignorance of the fact that it worsens the WED/RLS condition.

The Mayo clinic proceedings document is a good summary of the role of iron in WED/RLS, to show your doctor. There are also a couple of papers that show that ferritin levels should be much higher in WED patients than the "20" that labs call normal for non-WED patients. (WED is same thing as RLS, bythe way, two different names).

If you have the energy, I think the first step is to download as much of this as you think you can handle, and start reading, asking questions, and coming to understand 1.what augmentation is 2.guidelines for use of dopamine meds in WED/RLS 3.recommendations for treating augmentation 4.how iron levels affect RLS severity and liklihood of augmenting. 5,what meds can be used for WED and in what situations, especially what can be used for daily refractory WED.

Then decide = with our help, if you;d like - how much of this you should lay on your doctor. you will have to be judicious, because no doctor is going to read a stack of papers that you thrust at him. It's best to pick a few papers, and highlight the most important bits beforehand. Plan how you will summarize those bits - he won't actually be able to read them during your appointment. Plan to leave the papers with him to peruse later - once you;ve gotten him intrigued.

Plan how you will bring the whole issue up. Maybe start with the fact that you have had continuously worsening symptoms for X years, and did some research, and found some papers that seem to ring true, but you[d like his opinion on them. Then start your summary, showing him the highlighted parts as you go.

Have in mind what you want to know, and what you will and will not accept. For instance, don;t accept the status quo. Don't accept a dose increase of Mirapex. Don't accept a switch to another dopaminergic drug without a washout period, because your reading has told you that the augmentation will continue (symptom severity will remain elevated) until you have had that washout. Question any suggestion that you withdraw from Mirapex without the aid of an opioid (don't suggest the opioid yourself - ask him to suggest something) - say you're willing to try (if you are) but you need him to devise a backup plan in case the withdrawal is too horrendous because your reading has told you that withdrawal is often unbearable (point to the highlighted part).

Perhaps I am throwing too much at you at once; but if you can download and read as much as possible, my suggestions and examples will begin to make more sense. I think you really need to know more about your situation, so that you can hold your own in a situation where maybe your doctor is (unknowingly) suggesting something that will harm you. And so you can tell when it's time to give up on one doctor and find another.

It is important to get through the withdrawal from high doses of dopamine agonists. It is difficult, but the other side is so glorious in comparison that it is very worthwhile.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

sandy9356
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Re: Is your DA causing augmentation?

Postby sandy9356 » Sun Feb 12, 2017 3:03 pm

Before I start delving into all of this information, I had a terrible night and decided to make an appointment at Johns Hopkins. It is a 4 hour drive but at this point I think it is my best bet. My doctor is always on a timeframe and why try to get her on the right page; why not start with what is already known. Hopefully, someone here has been to Johns Hopkins and feels that this is a good choice. I value everything that each of you have taken the time to write to me My next step is to join rls.org. BTW...my ferritin level is over 30 because I have been supplementing with the iron so i think the next step is to start the withdrawal. I am sure that I am not going to get an appointment quickly, but having this support group is a lifesaver. I know what i will be doing today....READING, READING, READING.

Just ordered the book and will wait for its arrival..

THANK YOU...THANK YOU...THANK YOU

Polar Bear
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Re: Is your DA causing augmentation?

Postby Polar Bear » Sun Feb 12, 2017 4:27 pm

Sandy - You definitely are on a crazily high dose of Pramipexole. I'm also on a much too high dose of Ropinerole, also a DA, my dose is 4.5mg daily, stemming from the days when it was considered ok to go up to around 4mg daily. Now it is considered that 1mg Ropinerole is the max. But mine still isn't up in the realms of your own intake.

Are you considering starting your Withdrawal before getting an appt at John Hopkins?

The book you have ordered is excellent, small enough to have in your bag when you have a Dr appointment. Mine is dog eared and has post-its hanging out of pages that are marked with pencil notations.

badnights - what a great post of today 8.16am.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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Rustsmith
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Re: Is your DA causing augmentation?

Postby Rustsmith » Sun Feb 12, 2017 4:55 pm

Sandy, the doctors at Hopkins are some of the best RLS doctors in the world. Many of us would go there if we lived as close as you do. You have definitely made an excellent decision, especially considering you much pramipexole you are taking.

Hopkins has produced a series of videos that I am certain that you will find useful (and beneficial since you will be going there). You can find them at
http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/restless-legs-syndrome/whats-new-in-rls/

Also, since you appear to be augmented, you should know that the approach that is generally used by the doctors at Hopkins is one of completely getting off of the DA without the use of an opiate to cover the withdrawal symptoms. They will coach you in the specifics of the process and will provide as much support as they can, but it will be very difficult.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

sandy9356
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Re: Is your DA causing augmentation?

Postby sandy9356 » Sun Feb 12, 2017 5:35 pm

Well, my plan at this point based on my reading and your advice is to try to reduce my medication as much as possible. I am sure that I am not going to get an appointment at Hopkins quickly so some slow tapering should be a start. The thought of no medication is frightening!!! My question that continues to hang there is what is a I am od medication to use? So far, I have only read the negatives to the DA but what do others use that does not result in this level of augmentation. Do you need to completely withdraw from the DA before starting a different drug? I am an extremely active person (in spite of no sleep) and can not imagine what I will feel like if I actually do get sleep. I just can not thank each of you for taking the time to give me so much support and advice.

Rustsmith
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Re: Is your DA causing augmentation?

Postby Rustsmith » Sun Feb 12, 2017 6:55 pm

Sandy, first let me start by saying that at this time last year, I was severely augmented on pramipexole, but I was only taking 0.75 to 1mg a day. I was also waiting to get into see a new doctor, which took 3 months to get a new patient appointment. But it was well worth the wait.

Slowly tapering your dose of pramipexole is certainly a good place to start. Just be aware of the fact that as your dose of pramipexole goes down, there is a good chance that you will get even less sleep and have more RLS problems that you do now.

As for other meds and augmentation, augmentation is something that only occurs with the DAs (and rarely tramadol). There are two other classes of meds that are used to treat RLS, the alpha-2-delta meds and opiates. The alpha-2-deltas are anti-epileptic meds. The 3 most commonly used for RLS are gabapentin (Neurontin), gabapentin enacarbil (Horizant) and pregabalin (Lyrica). Horizant and Lyrica can be pricey, gabapentin is fairly inexpensive. These drugs can have side effect issues and often do not relieve the need-to-move symptoms of RLS, but can be very effective for helping us get needed sleep (but they will not overcome augmentation, I know!)

The other class of meds, the opiates work well for almost everyone, but have regulatory issues that pressure many doctors to not use them. Of course, the primary concerns are addiction and abuse, but studies have shown that RLS patients rarely abuse or become addicted to these meds.

I am also a very active person (I am a competition class runner). I continued to run races during my augmentation period and continue to this day. My transition was different from what you are likely to experience in that I simply switched from high dose pramipexole and gabapentin to methadone and gabapentin. I will always remember that first methadone pill and the feeling of how my body relaxed for the first time in over a year. One of the side effects of opiates is something that we often refer to as alerting, and this can also cause some disruption of sleep. I made my medication change in late March last year and it has only been about 2 months since I started getting more than 5 hrs sleep each night.

Finally, take a look through the board at some of the topics that discuss the use of medical marijuana (if it is legal where you live) and kratom. Many of us use one, or both, of these two to help our sleep (especially those of us on opiates).
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

SLEEPY ANGEL
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Re: Is your DA causing augmentation?

Postby SLEEPY ANGEL » Sun Feb 12, 2017 11:48 pm

For Rustsmith------ I know this was an old post, but I'm new here and have a question about it: I was confused because I thought that Augmentation has to do with one's rls getting worse after you've gone on medication(s) and it indicates your body tolerates the meds and you get your symptoms earlier in the day--- maybe requiring a higher dosage? But you say here that you probably "augmented prior to even being diagnosed"... and not having taken a pill yet...?

Rustsmith » Fri Sep 12, 2014 6:47 pm

It was interesting putting all of it together. I am like you with symptoms pretty much 24/7 in my legs, arms and torso prior to starting DAs. When I looked through the ASRS questionnaire, it would have indicated that I had a high probability of being augmented prior to even being diagnosed, much less taking my first pramipexole pill.

One of Dr Allen's points during the webinar was that when they surveyed a bunch of patients on DAs, there was a very high percentage that felt that the treatment was working and that they were doing well. However, there was also a very high percentage whose IRLS scores had increased. The conclusion was that the change had happened so gradually that most of the patients were not even aware of their augmented condition.

Rustsmith
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Re: Is your DA causing augmentation?

Postby Rustsmith » Mon Feb 13, 2017 3:30 am

SLEEPY ANGEL, yes that old post can be a bit confusing. The problem that I experienced was that my RLS was so severe that I had all of the SYMPTOMS of augmentation prior to being diagnosed or taking my first pill. My welcome to the discussion board included a suggestion that I was experiencing augmentation and that was about a week after I took my first pramipexole pill and was still feeling all of the early day benefits of a DA.

That does not mean that I was experiencing augmentation, it is just that if I had answered the questions on the augmentation questionnaire before I was first treated, it would have indicated augmentation - which was simply not possible. It is a weakness in the questionnaire and part of what makes the diagnosis of augmentation so tricky.

Fact of the matter is that I was put onto pramipexole and really did augment after about 12 months. When that happened, my old symptoms returned, so the only change to the way that I would have answered the questions was that the pramipexole had simply stopped being effective, even after I had been increased to a higher than recommended dose. Unlike most of Dr Allen's patients, I knew that I was having problems simply because my untreated condition is so severe.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

sandy9356
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Re: Is your DA causing augmentation?

Postby sandy9356 » Mon Feb 13, 2017 10:22 am

For you kind and dedicated souls who have been giving me so much support, I had my first 6 solid hours of sleep last night. It may have been exhaustion but I also cut my medicines. I took 1/2 mirapex at 6:00 p.m. with 1 50 mg. Tramadol and 1/2 Mirapex with 1 Tramadol at 9:00. I slept all night with no interruption. I am sure that I will feel the effects of the medicine reduction today, but if I can sleep, I can deal with almost anything during the day. Tonight will be interesting because I have an intense workout from 6:30 to 8:30 p.m. I have a difficult time sleeping after working out but I think that I will try to take the same level of medication and possible a long bath soak will be enough to relax me. Just knowing that this group is here to support me and provide input on my decisions along the way is so very comforting. I joined the foundation and plan to spend a part of my day plowing through the information. I am embarrassed to admit that it has taken me 65 years to finally get aggressive and fight back.

ViewsAskew
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Re: Is your DA causing augmentation?

Postby ViewsAskew » Tue Feb 14, 2017 3:52 am

You know, when I was severely augmented, I cut back my meds and had a similar experience. It really was better - not great - but better. I was able to get close to my starting dose and still sleep more than when I was taking so much. That eventually stopped working and I then was really screwed, but it gave more more time to try to find someone to help me.

Have fun reading!
Ann - Take what you need, leave the rest



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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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