Introducing myself

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
obviouslyjim
Posts: 8
Joined: Fri Apr 27, 2018 6:56 pm
Location: Auckland, NZ

Introducing myself

Postby obviouslyjim » Sun Apr 29, 2018 9:12 am

Hi there. Greetings from New Zealand. I'm a 52 yo male, and have been taking pramipexole for ~12 years. The original trigger was my wife finally having enough of being woken by my twitching legs. Growing up, I remember having twitchy feet, but not enough to mention it to anybody. I'm reaching out now because the meds' side-effects have become intolerable - severe tiredness 90 minutes after taking the meds & lasting for a couple of hours. Pretty much wiping out the evening.

Meds. Pramipexole. I started with .25mg, taken @ 9pm, and have gradually increased to where it's currently 1mg @ 6pm. Thanks to this site, I now recognize this is too high due to augmentation. The ferritin level was not part of my most recent blood work, so will be requesting this asap.

Symptoms. Predominantly twitching. Starts with the hands, usually the right. No sleep issues, getting ~7hrs/nite (and without nocturnal leg twitching). As long as I remember to take my meds, that is. If I forget (which happens annoyingly often given it's been daily for over 10 years, but I digress), then sleep is a problem until they kick in. Even with the more pronounced symptoms due to augmentation, pramipexole still keeps the symptoms in check; but the side effects! Keen to switch meds.
Cheers,
Jim.

Rustsmith
Moderator
Posts: 3287
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Introducing myself

Postby Rustsmith » Sun Apr 29, 2018 12:50 pm

obviouslyjim, welcome to the discussion board and glad that we have already been of help to you. I am like you in that I was once augmented with a dose of 1mg of pramipexole. Unlike you, my issue was that I was only sleeping a few hours each night.

I was fortunate to find a doctor who was willing to prescribe me an opioid. We both knew that I was going to need an opioid after getting off of the pramipexole and she was not one of the doctors who would have wanted me to get off of the pramipexole via the "cold turkey" approach so that my neural receptors would reset to normal. I therefore had a flawless transition where I started taking the opioid and then ramped down my pramipexole dose.

If your doctor decides that he/she wants you to quit the pramipexole before starting something else, you will first need to reduce your pramipexole dose before actually stopping. This will help reduce the chance of experiencing DAWS (dopamine agonist withdrawal syndrome). But be aware, that both ramping the dose down and then stopping will be very difficult if you have to do it without an opioid. You will go for days with no sleep before finally starting to improve about a week later.

Please keep us informed about how your situation progresses and hopefully your doctor will be willing to prescribe an opioid to make quitting much less 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.

stjohnh
Posts: 561
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Introducing myself

Postby stjohnh » Sun Apr 29, 2018 2:30 pm

Hi Obviouslyjim, welcome to the RLS community. I also augmented on pramipexole, I think the dose was approximately a 0.5 mg but I don't remember exactly. I then used the Neupro patch for a couple of months but started augmenting on it along with lots of rashes.

Steve's comments are right on the button and there is a fairly good chance you will need an opioid after you get off the pramipexole, although your doctor may reasonably want you to try Neupro patch, or gabapentin and its relatives Lyrica or Horizant.

Unfortunately, getting off the pramipexole, especially without using an opioid to help, will indeed be very difficult. Several days without sleep, frequently up pacing all night, and feeling absolutely terrible is the usual for a person who has augmented and is getting off pramipexole.

Get your ferritin checked and be sure and find out the numerical results, not just normal or abnormal. The usual normal for people without RLS is approximately 20 or above. For people with RLS it needs to be at least 75, preferably over 100.

Over the last couple of years rls specialists have recognized that the recommended safe maximum doses for pramipexole and similar medicines is much lower than had been previously thought. Maximum doses of pramipexole currently recommended are on the order of 0.25 mg. Don't let your current doctor try to increase your pramipexole, you're absolutely right, it is too high a dose and you need to get off it.
Blessings,
Holland

obviouslyjim
Posts: 8
Joined: Fri Apr 27, 2018 6:56 pm
Location: Auckland, NZ

Re: Introducing myself

Postby obviouslyjim » Sat May 26, 2018 6:09 am

Thanks for the responses. I've managed to make some reasonable progress in the past month.

- Found a specialist at a Sleep Centre. Couldn't find an RLS specialist, but he seems RLS-aware & well informed.
- My ferritin clocked in at 57; now taking ferrograd (325mg/day).
- He is keen to help me get off pramipexole & switch over to gabapentin. However, he is reluctant to incorporate an opioid for the transition.
- I am hoping to get community feedback on his recommended approach, which is: stay on pramipexole, gradually adding gabapentin, then gradually reducing pramipexole (over the course of, say, 8-10 weeks). My concern is that my neural receptors will not get the chance to reset to normal. To help with the transition, he offered up a grand total of 7 clonazepam tabs. Clearly concerned about an addict in RLS-clothing.
- The proposed schedule:
wk 1 = 0.75 P, 900 G
wk 2 = 0.50 P, 1200 G
wk 3 = same
wk 4 = 0.375 P, 1500 G
wk 5 = same
wk 6 = 0.25 P, ~1500 G
and so on, altho he did say I could self-regulate Gabapentin dose as "there is no 'too high' dosage".

I would appreciate hearing any feedback, recommendations or suggestions.

Cheers, Jim.
Cheers,
Jim.

Rustsmith
Moderator
Posts: 3287
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Introducing myself

Postby Rustsmith » Sat May 26, 2018 1:22 pm

Jim, the gabapentin probably isn't going to help very much as you reduce your pramipexole dose. It simply isn't strong enough to counter the reducing level of dopamine. Gabapentin also doesn't help manage the RLS movement issues for everyone. However, it is something that you have to try to find out and your doctor obviously prefers having you on gabapentin to an opioid.

As for the reduced pramipexole, the worst of it will probably be near the end when you eventually get to where you stop taking it. You will probably have sleep issues during the entire period, but you should be prepared for very little to no sleep for about a week at the end. So, if your doctor is only going to let you have a total of 7 clonazepam pills, don't use them up too early in the process because it will be a case of "the worst is yet to come".

Finally, you say that your doctor is RLS aware, but there is a good chance that he has not seen this publication. It was written for use in just your situation, so it might help change your doctor's mind about opioids. https://www.mayoclinicproceedings.org/article/S0025-6196(17)30825-X/fulltext
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: 561
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Introducing myself

Postby stjohnh » Sat May 26, 2018 1:35 pm

Jim,
As I reread your original post it's not 100% clear to me that you have RLS. You certainly have PLMS, but do you have a strong urge to move symptom that is resolved by standing up and walking around?
Blessings,
Holland

obviouslyjim
Posts: 8
Joined: Fri Apr 27, 2018 6:56 pm
Location: Auckland, NZ

Re: Introducing myself

Postby obviouslyjim » Sat May 26, 2018 9:33 pm

Thanks, guys. For whatever reason, I had it in my mind the ongoing, long-term med was gabapentin (by itself), and the opioid was only to assist with the transition/withdrawal from pramipexole. So doc's proposed approach seemed reasonable. But after further reading of community posts, along with the (terrific) mayo clinic publication, I see that the opioid is probably the main med, with gabapentin playing a 'support' role. Is that a more accurate description? Will loop back with my doc.

@Holland - a sharp-eyed observation. thanks for asking. Nighttime leg twitches were one of the triggers for getting treatment. I've gone back and re-reviewed both RLS & PLMS... and confirmed it is RLS. The nocturnal twitches no longer occur, and I have none of the other PLMS symptoms (no daytime sleepiness, no trouble getting to sleep, and no sleep interruption issues).
Cheers,
Jim.

Rustsmith
Moderator
Posts: 3287
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Introducing myself

Postby Rustsmith » Sat May 26, 2018 10:21 pm

Jim, you may very well have not misunderstood your doctor's intentions. Due to the issues with opioids, many doctors have become very hesitant when it comes to prescribing opioids for chronic conditions. That is what prompted the experts to write the Mayo Clinic paper.

So, your doctor very possibly intends for you to use the opioid for the withdrawal process (which is a much better approach than many of us get when trying to get off of pramipexole). If that is the case, then you will probably have to give gabapentin by itself a try, if for no other reason than to prove to your doctor that it will not be enough.

If gabapentin alone will not do it, then many of us end up using a combination approach rather than relying upon one medication for our RLS. I use a combination of three medications along with an edible form of marijuana (which is legal where I live). I know of others who use 2 or 3 different meds. The point of this is to try to keep the dose of all of them as low as possible. This avoids issues such as tolerance and re-augmentation for those of us who still take a low dose of pramipexole or ropinirole.
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.

obviouslyjim
Posts: 8
Joined: Fri Apr 27, 2018 6:56 pm
Location: Auckland, NZ

Re: Introducing myself

Postby obviouslyjim » Sun May 27, 2018 12:47 am

Hi Steve. Very much a trial and error approach, I see. And not surprising. If it were easy, it woulda been resolved long ago.

I *wish* my doc had suggested an opioid for the withdrawal. That's what I had requested, based on all the forum's descriptions, but he's being very cautious (the 7 clonazepam tabs). Not inappropriately, I realize. But it'll likely mean a protracted t-and-e, with 'upping the meds' only after evidence of failure. Sigh. C'est la vie.
Cheers,
Jim.

ViewsAskew
Moderator
Posts: 15262
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Introducing myself

Postby ViewsAskew » Sun May 27, 2018 3:13 pm

Jim - seems to me that the taper is very long. Some doctors suggest a moderate taper, some just have you stop if your dose of pramipexole is relatively low - for example less than 1 mg. or stop when you reach 1 mg. Dr Buchfuhrer is one who rarely suggests a taper - when he does, he does it every 3 days. I understand the risk of DAWS and I haven't looked at the literature for a long time - the last I did, it was exceedingly rare at lower doses and seemed to occur primarily with those who had ICD - impulse control issues.

Tapering can keep you in agony much longer than you need be.

I always suggest that people write to Dr. Buchfuhrer (somno@verizon.net) simply because it's something you can share with your doctor and it may be more persuasive than saying some random people on the internet said - if you get my drift. Email him and show him your withdrawal schedule and see what he says. When I did that, I was able to take the replies to my doctor and it changed his mind about how to approach it.
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.

Kwren214
Posts: 1
Joined: Thu Apr 26, 2018 1:27 am

Re: Introducing myself

Postby Kwren214 » Mon May 28, 2018 12:58 am

Hi Everyone
My name is Kathryn - I'm a 63 yr old female that has had RLS since I was 18 yrs old. They were lways manageable with many nights up running around dining room tables, but I was able to maintain a normal life until I turned 45. I Went to my internist and she RX Carbidopa/levadopa 25mg/100mg. which worked for many yrs until I augmented. I then went to a sleep specialist and was given pramiprexole 0.25mg. It worked for few yrs then I found myself doing more and adding the Carbidopa /levadopa to the regime until I discovered something that has changed my life with RLS! I found water to work for me. If I keep drinking water until the sensations disappear ( usually drink about 3-4 8oz glasses) the RLS stops, It works every time even on an airplane. BUT I still have to take 0.25 of pramiprexole and 1/2 of the Carbidopa/levadopa at 7 pm, this gives me total relief and no augmentation, plus I sleep thru the night. I would like to get off the pramiprexole and am learning from your posts. Thank you!
PS my symptoms are creepy crawly sensations in my legs that are somewhat relieved with standing/walking. My symptoms were always worse when I traveled which I now realize was because I drank far less water when traveling.

obviouslyjim
Posts: 8
Joined: Fri Apr 27, 2018 6:56 pm
Location: Auckland, NZ

Re: Introducing myself

Postby obviouslyjim » Mon May 28, 2018 5:22 pm

Thanks very much for the suggestion, Ann. Will contact Dr. Buchfuhrer. I was rather surprised/confused/stunned/dismayed/all-of-the-above myself at the proposed withdrawal schedule.
Cheers,
Jim.

ViewsAskew
Moderator
Posts: 15262
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Introducing myself

Postby ViewsAskew » Tue May 29, 2018 5:45 am

obviouslyjim wrote:Thanks very much for the suggestion, Ann. Will contact Dr. Buchfuhrer. I was rather surprised/confused/stunned/dismayed/all-of-the-above myself at the proposed withdrawal schedule.


Happy to share - mostly hope it helps. Tapers are usually not much fun and doing it for weeks sounds like abject misery!
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.

legsbestill
Posts: 476
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Introducing myself

Postby legsbestill » Tue May 29, 2018 8:21 am

Hi Kathryn,
Thank you for your intriguing remedy. I tried drinking lots of water for a while and it may have helped marginally with symptoms but I found the need to be constantly close to a bathroom quite difficult. I have never tried using water to alleviate symptoms once they come on. But do you not find that your subsequent sleep is repeatedly disturbed by the need to empty your bladder?

legsbestill
Posts: 476
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Introducing myself

Postby legsbestill » Tue May 29, 2018 8:24 am

Hi Jim,
Good luck with your taper. In the meantime, given that you are on such a high dose of pramipexole you should look out of sudden onset sleep which can be very dangerous especially when driving.
You will be amazed at how much more yourself you feel when you get off pramipexole. It is hard - very hard - but ultimately well worth the pain.


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