Refractory RLS

For everything and anything else not covered in the other RLS/WED sections.
2restless
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Joined: Sun Jan 28, 2018 3:10 pm

Refractory RLS

Postby 2restless » Sat May 12, 2018 11:14 pm

We have been weaning my husbands pramipexole - starting at 3 mg, now at 0.75. He is taking 600 mg Horizant before dinner, with 0.5 mg of pramipexole, and then the last 0.25 mg before bed. We got a script for oxycodone to help with the withdrawal as we wean. The first few times he used it, it helped, but then it stopped working. He would take 10 mg and it did nothing, so he quit using it. Currently , he is experiencing constant akathisia. This week, he went 60 hours with no sleep at all, and constant symptoms. He could not sit for 10 seconds. The more sleep deprived he got, the worse the akathisia. He was seen by his dr, who said we needed to push up the oxycodone dosage. "Push it up until it stops the symptoms." We went to 25 mg and still it did nothing. I finally took him into the Emergency Dept that night and they titrated a total of 18 mg of Morphine, which put him to sleep, slowed the movements in the leg, but didn't stop it completely. He did however sleep 8 hours that night, and felt good the next day - went to work. That night it started again at 8 pm. He had no sleep last night, and continues to have symptoms all day. He took 20 mg of oxycodone at 12 N, and was able to nap for a few hours, but I watched him, and he was jumping around the whole time he was sleeping.

I don't know what this is or what to do. We have 3 weeks before he sees a neurologist here. His Horizant was increased to twice/day, and he is being scheduled for an iron infusion in the next few days (ferritin 93). I am very afraid of these doses of oxycodone and long term use of it. He seems to be so resistant to many medications, able to take large doses with no effect. I don't know if he is a super fast metabolizer or what. Is it possible that he is still augmenting? These symptoms are worse than any he went thru when we were tapering. I have tendency to believe this is how bad his RLS is rather than augmentation. I have been reading about Kratom, Morphine intrathecal pumps, Methadone (I am afraid he would also need really high doses of that), Botox injections in the legs. Has anyone else experienced this or know of someone who did? Not sure what to do to get this man some sleep.

Rustsmith
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Re: Refractory RLS

Postby Rustsmith » Sun May 13, 2018 12:16 am

If you are a member of the RLS Foundation, they have a webinar in their members only section titled "What is the Role of Opiates in RLS?". It was presented by Dr Earley of Johns Hopkins and will address many questions that you probably have (and many you haven't thought of). If you aren't a member, this webinar alone would be worth the cost of joining.

He stated that not all opioid medications are equal and that if one does not work or causes unacceptable side effects, then you (and your doctor) should try something different. So, you might consider asking to try something different.

Oxycodone is sort of the short half life version of Oxycontin, so maybe he needs to build up a reserve and his metabolism isn't allowing that to happen.

Another thought is that I believe that he said that methadone not only addressed the opioid side of treatment, but also provides a bit of action for the dopamine receptors without getting into the augmentation issues caused by the dopamine agonists. Methadone is also a long half life medication that would not be metabolized as quickly as oxycodone. This is part of the reason why many of the experts lean toward the use of methadone for severe refractory RLS.

Finally, there is a method that is used to compare the dose of various opioids that is called Morphine Equivalent Units (MEU). The procedure provides you with a comparison of treatment levels between the various meds. So, his 10mg of oxycodone is 15MEU. My 5mg of methadone (the lowest dose available) is also 15MEU, yet I have been told by 2 different neurologists familiar with RLS that the normal dose of methadone is 10mg (or 30MEU).

Hope that little bit of info helps and I am sure that others will have much more to say.
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
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Re: Refractory RLS

Postby stjohnh » Sun May 13, 2018 12:46 am

2restless, Steve made some great points on opioid treatment. To answer one of your questions, the augmentation spell isn't really over until your husband gets completely off the pramipexole. Also, after he has been off it a while his symptoms will likely improve, so he will respond better to the opioid.

Additionally, he may have good, perhaps even remarkable response to the iron infusion.

I know the problem appears nearly insurmountable at this point, likely you both are frightened of how bad he feels, but it looks like you are on the right track (getting off the pramipexole, getting iron infusion, and moving to opioids). Very, very hard now, but almost certain to get better.
Blessings,
Holland

ViewsAskew
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Re: Refractory RLS

Postby ViewsAskew » Sun May 13, 2018 9:00 pm

When I was augmented and stopped pramipexole, it initially was better when I reduced it, then hit a point where symptoms increased. Given that your husband is taking a relatively small dose of pramipexole by now, I wonder if it might be time to simply stop it - likely no reason to prolong it and as long as he takes any of it, he cannot get through the augmentation. Of course, I'd check with Dr. Buchfuhrer first - he answers emails and offers excellent advice. You can reach him at somno@verizon.net. He usually answers within a day or two unless he is traveling.

When I stopped, I can remember having constant movements of multiple body parts - my legs would kick out when I was trying to walk, throwing me off balance, for example. I didn't sleep for days. I tried without any opioids the first time - by day 5 I restarted the pramipexole. I tried again with a moderate opioid - I went through all I had in just a few days and it didn't do much to help, but it did enough to make me think that a stronger opioid might work.

The third time was the charm - I need 10-15 mg of methadone, however. As Steve noted, it's important to look at the equivalency of the opioids - otherwise it isn't likely to work. The average methadone dose in RLS patients is between 10 and 15 mg, but some patients take 30 mg. And, as noted, augmentation (or the effects of it) continue for some for quite awhile after you stop the DA. The worst lasts 4 to 15 days, after which it gets better. For some quickly, for others slowly.

As already discussed, he doesn't have to use opioids forever. I originally augmented in under 2 weeks and was augmented for about 1.5 years before I was able to stop it and stopping it was hard and took a long time, so thought I'd never use any drug in this class ever again. After a few years, though, I added pramipexole back in, but never more than a few days in a row - it helped me keep the opioid use lower and ensured I didn't augment again. I have tried various ways of taking it over the years, sometimes not using it at all. After my second iron infusion, I was able to use pramipexole for 2 months with no augmentation at all!

He also might find that he doesn't need opioids at all once the worst of this is over. Other drugs might work - even if he tried them before and they didn't. Augmentation does funny things to the brain and some of us have noticed that we continued to improve - albeit slowly - for years after. I used to have symptoms 24/7. At some point it was more like 18/7. Now it's much lower than that - but it took me years to get here. Other people find they go back to their baseline within a few months and that they can effectively use the other options out there.

There are also non-pharma options, depending on where you live and what you want to try. Some people use cannabis, some a substance called kratom. Others find that a TENS unit works, and so on.

Mostly - hang in there. It will get better, even if it seems terrible right now ('cuz it is terrible!).
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
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Location: Dublin Ireland

Re: Refractory RLS

Postby legsbestill » Sun May 13, 2018 9:05 pm

Over two months after I took my last pramipexole tablet I was still experiencing severe rls all night and got at most a few hours sleep each week. At that stage my GP prescribed OxyContin. I needed 30mg to get relief - 20mg did not help much.

I started to recover once I started taking OxyContin at 30mgs daily - I had to take it all in the evening to get some sleep at night. I also gradually got my iron levels up with oral iron but I think the recovery was really kick-started by the rest I got from using OxyContin. Lack of sleep definitely exacerbated rls and it becomes a vicious cycle which the OxyContin helps to break.

After a couple of months I needed much less OxyContin to treat my symptoms. I now (2 years later) get by with very small doses of a multiplicity of drugs - none of which are opioids.

Your husband was on a really high dose of pramipexole which could be the reason he is having such a hard time now. It could well be that he needs more OxyContin for now. I think 30mgs is the highest dose so he can afford to go higher than he is currently taking (though Steve’s point about the benefits of methadone are also good). I won’t lie to you, coming off OxyContin is not a picnic but it is entirely do-able and not as hard as withdrawing from pramipexole.

Another option to consider is adding in some Kratom - see StJohn’s thread about the physiological effects of Kratom. As I recall he opines that Kratom works on slightly different receptors to opioids and consequently may work in conjunction with opioids. This might enable your husband to keep the oxycodone dose lower.

legsbestill
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Location: Dublin Ireland

Re: Refractory RLS

Postby legsbestill » Sun May 13, 2018 9:16 pm

Just a couple more points: I would not expect Horizant to make much impact on his symptoms at this stage. It is worth continuing to take it for when his augmented symptoms settle down as it can take a while to kick in.

My instinct would be the same as Ann’s: that it might be worth moving towards discontinuing the pramipexole - or at least reducing the dose again soon. I would not expect your husband to get much work done from now until after the pramipexole has been eliminated from his system.

I would not make any assumptions about what his level of rls actually is until at least 6 months after finishing pramipexole. I found my symptoms continued to improve for a long time after.

2restless
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Joined: Sun Jan 28, 2018 3:10 pm

Re: Refractory RLS

Postby 2restless » Wed May 16, 2018 2:11 pm

Thank you all for your comments. This is very helpful. He is starting IV iron today. A literature search by the doctor revealed that low molecular weight iron (iron gluconate) gets into the CNS system best, so he is having 8 infusions (1/day) 125 mg each. I have been told that medicare will not pay for these infusions, as this is considered experiential. I prefer him to get one infusion to cut down the cost of the transfusion center. Have any of you had this? Do you know what iron formulation you had? i am most familiar with Feraheme 510 mg, two doses given 1 week apart.

ViewsAskew
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Re: Refractory RLS

Postby ViewsAskew » Fri May 18, 2018 8:28 am

I have had it twice in one infusion of 1000 and a third time in two of 750 (mistake by the doctor - but my ferritin is high now!).

I think I had InFed - but may be remembering incorrectly. I don't think there are many low molecular weigh formulations, so likely you don't have more than an option or two.
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: Refractory RLS

Postby badnights » Sat May 19, 2018 2:23 am

It might take a while for him to feel if there's going to be any effect from the infusions. If he hasn't already done so, he should think about ending the taper and stopping the pramipexole completely immediately.

Most people find at some point that tapering just prolongs the agony, and the agony is no less intense for tapering. He's not on a very high dose anymore, so he's probably feeling the full effects of withdrawal from an augmented state, but because there is still a dopaminergic drug entering his system, his body can't begin the re-setting phase. It is only after re-setting, which happens a week or so after all dopaminergics are stopped, that symptoms will recede back to their pre-augmented state. (Some of us feel that our symptoms didn't ever go back that far, but some do.) (Re-setting for some people takes longer).
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.

jewelsong
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Joined: Fri Jan 30, 2015 8:10 am

Re: Refractory RLS

Postby jewelsong » Sat May 26, 2018 8:54 pm

I just had 500 mg Feraheme earlier this week. Medicare paid for it. It also paid for two infusions of the same iron form a week apart three years ago when my iron levels were even lower. Be aware that this is just plain Medicare. If you have a Medicare Advantage plan, the rules are set by your plan manager and their goal is to keep costs as low as possible.

badnights
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Re: Refractory RLS

Postby badnights » Wed May 30, 2018 4:30 am

Hi jewelsong
Do you know if one of your iron measures other than ferritin was low when you got the infusions? I think Medicare has an issue paying for it if it's for RLS/WED that is marked only by low ferritin, but they pay without argument if it's for iron-deficiency anemia with low hemoglobin. Not all RLS/WEDers have iron-deficiency anemia, though.
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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