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brossman
Posts: 14
Joined: Sat Apr 20, 2019 4:20 pm

I'm new here!

Postby brossman » Sun Apr 21, 2019 3:34 pm

Hi! I am 67 and have had RLS for about 30 years. My mom and older sister also have it. I started on Gabapentin, but didn't like the fog and I gained a lot of weight. Then tried several sleeping pills and finally chlorazepam, which I really disliked. I felt like I was moving through peanut butter. Then came pramipexole, which was a wonder drug for me - for many years. I did have to keep upping my dosage as my symptoms kept getting progressively worse. I was up to 1.0 mg day on the extended release form when I realized that I was suffering augmentation, extreme fatigue, and impulse control disorder. My neurologist is a headache doctor and I had to tell him what was going on, his instinct was to increase my dosage even though it was in my arms and symptoms were starting well before noon. I can describe the impulse control if anyone is interested. My doctor tried to get me off cold turkey by substituting gabapentin and tramadol, which did nothing. I was miserable for 5 nights and went back on the pramipexole as I waited to get into Mayo in Rochester (I live just north of Chicago). This was in October, I finally got into Mayo in February. My ferritin was close to 50, am on iron now. Magnesium and D levels are fine. Mayo doctor started me on Neupro patch while I wean off the pramipexole. However, I have just gone up to a 6 mg patch and cannot totally wean off the pramipexole. I still need 0.375 to 0.5/day with the 6 mg Neupro. I am leery of Lyrica, the only drug I think I have not tried because of my propensity of gaining weight - that was one symptom of the impulse control disorder - binge eating. However, Neupro does not seem to be doing it for me. I am also aware that I may get augmentation with Neupro. That is my story up to now. Does anyone know of a good RLS doctor in the Chicago area, who is not averse to using opioids? They may be in my future.

Rustsmith
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Location: Pueblo, Colorado

Re: I'm new here!

Postby Rustsmith » Sun Apr 21, 2019 5:57 pm

brossman, my story is very similar to yours, including all the failed medications and avoiding Lyrica. I augmented on pramipexole (at 0.5mg), then on Neupro (hit 4mg) and was put back onto pramipexole with permission to increase up to 1mg/day because I was in the process of moving and my doctor didn't want to put me on an opioid, which would have made my life totally miserable while trying to find a new doctor. Once I finally got in to see her eight months later, my new doctor put me on methadone with instructions to cut my pramipexole to 0.25mg. I did that as soon as I got my new prescription filled and felt better within minutes of taking the first pill and I slept better that night than I had in over a year.

Unfortunately, I can't help with a doctor in Chicago. Many of us have to travel long distances to see an RLS specialist (I drive 100 miles each way and feel lucky to have one that close). The closest to you will be the Mayo Clinic in Rochester, MN.
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.

stjohnh
Posts: 794
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: I'm new here!

Postby stjohnh » Sun Apr 21, 2019 6:21 pm

brossman, Welcome !!!

Another path you should consider is IV Iron. You are already on oral iron, and it may help, but for most the real benefit is IV iron infusion.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood tests doctors usually do (ferritin test) to check for low iron only check for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub
Blessings,
Holland

badnights
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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: I'm new here!

Postby badnights » Mon Apr 22, 2019 12:35 am

Hi brossman. Your story is certainly familiar to many of us. There are horror stories about impulse control disorder here, and the heroic efforts some people went to in order to get themselves off pramipexole. One that comes to mind is a user named Jakesmom.

I would think you are still augmented from the pramipexole. Moving from one DA to another without a washout period prevents your body from recovering from augmentation. Since you are still augmented, you are probably taking much more Neupro than you would have needed if you could have had a period in which to re-set things, and the augmentation continues apace.

What clinic were you in at Mayo? I'm surprised they're treating you that way because the Center for Sleep Medicine there is a Foundation-accredited RLS Quality Care Center. I agree wiht Holland; you should look into IV iron. Meanwhile, ensure you're taking oral iron with vitamin C, on an empty stomach if you can stomach that ( :) have to inject some bad humor), to ensure maximum absorption. You may need 2 pills a day of 65 mg elemental iron.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

brossman
Posts: 14
Joined: Sat Apr 20, 2019 4:20 pm

Re: I'm new here!

Postby brossman » Tue Apr 23, 2019 11:39 pm

Thank you all for your very helpful replies. The idea that I may still be augmented is fascinating to me and is something I will bring up to my Mayo doctor. She is indeed from the Center for Sleep Medicine at Mayo in Rochester. We discussed IV iron. She wanted to wait until I finished a 3 month course of 3 pills/day of 65 mg elemental iron, empty stomach taken with Vitamin C. Interestingly, she said that for people with a strong family history of RLS, sometimes the ferritin level is meaningless, yet she would still try IV iron if my level had not risen enough. My mother, sister and maternal grandmother are (and were) sufferers of RLS. My grandma just drank quinine for her symptoms.

stjohnh
Posts: 794
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: I'm new here!

Postby stjohnh » Wed Apr 24, 2019 12:20 am

Yay! You may get IV iron.
Blessings,
Holland

ViewsAskew
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Location: Los Angeles

Re: I'm new here!

Postby ViewsAskew » Wed Apr 24, 2019 9:38 pm

Hi brossman - hope you find a Chicago doc. I lived in the city until 2 years ago and never found anyone willing. My GP was originally OK with it, but stopped working with me after a couple years. I tried over 20 docs in a 10 year period. In 2007, I started flying to CA to see Dr. Buchfurhrer. I had a doc for a couple years that helped, but she stopped (refused to fill a script on a Friday) abruptly, so I started flying out here again. Eventually I just moved here - now I live in LA and see him regularly. Infusions help me some, but I am not one of the lucky ones. I can reduce my meds about 45%.

A support group was starting about the time I left - in the northern suburbs. I never went as I knew I was moving. Wonder if they are still going and if they know of anyone?
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.

brossman
Posts: 14
Joined: Sat Apr 20, 2019 4:20 pm

Re: I'm new here!

Postby brossman » Mon May 06, 2019 6:49 pm

My latest ferritin is 149 - definitely on the upswing. I have an appointment with my Mayo doctor this Thursday to discuss my medication options. I am currently at 6 mg Neupro patches and still have to add 0.375 of pramipexole to get any sleep. Just last night I noticed it in my arms again. I have tried:
sleeping pills - can't remember names, but nothing worked
clorazepam - felt like I was walking through peanut butter, just couldn't get going
gabapentin (900/day) and horizant - weight gain and not effective after awhile
pramipexole - 0.50 mg/day for years before augmenting
pramipexole ER - 1.0 mg/day - augmentation and impulse control disorder
gabapentin, tramadol, and oxazepam - during failed attempt to wean from pramipexole
Neupro and pramipexole - 6 mg Neupro and 0.375 pramipexole

brossman
Posts: 14
Joined: Sat Apr 20, 2019 4:20 pm

Re: I'm new here!

Postby brossman » Mon May 06, 2019 6:54 pm

Rest of message (sorry)
I am reluctant to try Lyrica because of the side effect of weight gain (again) and my mother took it and felt so depressed on it. She and I react similarly to medication. I have a strong family history of RLS.
My question is: when I go to Mayo on Thursday, what are my options for medication? I am not opposed to opioids, but should I give Lyrica a trial first? What is the best way to get off both the Neupro and pramipexole?
Any other questions I should be thinking about?
Thanks

Rustsmith
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Posts: 3877
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: I'm new here!

Postby Rustsmith » Mon May 06, 2019 7:12 pm

Your experience with sleeping pills and clorazepam are not surprising. Very few of us benefit from sleeping pills or benzos if we have significant levels of RLS.

Given your current dose of Neupro and pramipexole plus the fact that you are starting to have symptoms in your arms is a pretty good indicator that you are augmenting once again. The max recommended dose of Neupro for RLS is supposed to be 4mg.

That really leaves only two options. If your ferritin levels are still low, then IV iron seems like a likely next step. As for the DAs, I would expect that you will once again need to use an opioid such as the tramadol that you used last time or methadone. There are only two ways to get off of them, cold turkey and opioids. Given the high dose of DAs that you are currently on, even the cold turkey approach would probably require a taper in dose to get down to about half of where you are now in order to reduce the chances of DAWS (dopamine agonist withdrawal syndrome). DAWS can cause permanent neurological damage that cannot be treated. If you take that approach, during a taper and going cold turkey you can expect to get very little to zero sleep for as much as a week. That is why many of us prefer the opioid approach, but some doctors are interested in finding out what your RLS baseline is like once you are off of DAs and don't want you to have to also go through opioid withdrawal after doing it with DAs.
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.

brossman
Posts: 14
Joined: Sat Apr 20, 2019 4:20 pm

Re: I'm new here!

Postby brossman » Mon May 06, 2019 8:17 pm

Ferritin is 149 as of last Friday. Last time I tried DA withdrawal (cold turkey), I was totally miserable even with the gabapentin, tramadol and oxazepam. I slept for maybe an hour a night for 4 nights and then restarted pramipexole because my husband and I were going on vacation and needed to sleep in the same bed, I couldn't get into Mayo that soon, and my doctor was out of recommendations. That's how I got into this mess right now. I am desperate to get off the Neupro and pramipexole. The Neupro is itchy and I do not like the fact that I am augmenting. I have never heard of the permanent damage from DAWS. Good thing to know before my appointment at Mayo. Thank you.

badnights
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Location: Northwest Territories, Canada

Re: I'm new here!

Postby badnights » Tue May 14, 2019 8:33 pm

Hi brossman
DAWS is not that common, though it is scary.

I augmented on fairly low doses, so I haven't had to come off a high dose, but based on what other people on high doses here have experienced, the first part of a taper will not be bad, then you will reach a point when you are not sleeping. At that point it is best to do the rest of the taper as fast as your doctor allows, to minimize the number of days you go without sleep. Once you have taken the last DA, it may be three or five days before you start to sleep again, unless you are given a high enough dose of a potent opioid to take the worst of the symptoms away. As far as I'm concerned, it's inhumane to let anyone live through that unaided. Ideally you would have 1-2 weeks worth of opioids to get over the worse of the DA withdrawal, then nothing for a couple of weeks to let your body re-set to some sort of baseline state.

As I said before, you probably never left the augmented state, because you went on rotigotine without stopping pramipexole. Pramipexole works on the D2 and D3 dopamine receptors, rotigotine on D1, D2 and D3; so the receptors affected by pramipexole didn't get a break. The rotigotine may have masked it for a while, because it lasts longer in the body before breaking down.

You need to be off all DAs for at least a few weeks for your body to adjust. (This may be different for people wtih WED/RLS as opposed to people without it.) As far as I know, simply lowering the dose rarely if ever gets rid of augmentation. Most specialists recommend a wahsout period before resuming the dopamine agonist at a lower dose. Even that method is a stop-gap; the augmentation usualy returns.

So I suspect you have to get off both rotigotine and pramipexole for a few weeks. To make that process less like heinous torture, a strong opioid is usually necessary. You can tell your doctor you;re afraid of the withdrawal phase, during which you can expect your sensory and urge-to-move symptoms to become worse than you have yet experienced; but it's best not to actually ask for an opioid.

If you have to do this without an opioid, you can. It's not pleasant, you should wipe your schedule clean for a week at least, expect nothing of yourself except making it through the next hour; if you do that, you're winning. You can do it by remembering (write it down because your mind will disappear from the sleep deprivation and torture) but remember that ths is the only way to make your symptoms get better - to reduce them. the only way is to go thru this worsening all the way to the other side. It doesn't get easier, so get it over with.

You have two issues to discuss withyour doctor - how to get thru the withdrawal from the DAs, and how to treat your symptoms once that's over. If she wants to try you on Lyrica after the withdrawal, give it a shot, watch out for the depression and weight gain and tell her if either problem surfaces. But before that, you have to withdraw. Lyrica is ludicrous during DA withdrawal. It won't do a thing. So make sure you get answers to those two issues.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.


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