Restless Legs Syndrome (RLS) Discussion Board

My husband is on Methadone, which has worked wonders. His RLS during the day is so much better, he can read again, sit and watch movies. He is on 20 mg/day, also takes 150mg Lyrica twice a day, and on some nights 0.125 to 0.25 mg pramipexole. (he was on 3 mg at one time, augmented terribly). The problem is that while his RLS is controlled during daytime hours, at night he is up frequently - 2-5 times. He sleeps for 1 hour, wakes with RLS, up again, goes back, sleeps 1 hour, up again. Any idea why this happens? He can be fine in the evening, goes to bed, and sometimes within 5 minutes of lying down he is up again. He used to to split the Methadone dose 10AM-10pm; now trying all at night 6 pm to see if it would get him through. It hasn't made any difference. Has anyone else experienced this?

Sounds odd for RLS. Are you SURE he isn't waking up to pee? The pattern you describe is very common for old men (nearly universal).

No, its not a urinary problem. His restless legs are waking him.

Are you sure he isn't still augmented? If he never stopped it, my gut says that is the first place to look. Also, ferritin levels. I only took pramipexole a couple times a week after taking 2 years off after augmenting. Once I had a couple infusions, I could then take it regularly. I still stop it every few months to prevent additional issues.

Then again, he just could have really nasty symptoms. I find that I need 30 mg of methadone if that is the only thing I am taking. I need .25 pramipexole with 15 mg methadone, sometimes I can get it to 12.5, but usually 15. With .125 pramipexole, I need 20-25mg methadone. The pregabalin doesn't help my symptoms, but helps me sleep.

Sounds like augmentation to me too. When he augmented the first time, did he stop it completely? If not, I really believe it's augmentation. You have to stay off of it for at least a couple of months before starting again. Just a thought.
I hope he is retired and not still working. It's very hard to function on so little sleep. I couldn't do it. Had to stop working. Retired early after just turning 60. It affected my short term memory.
Good luck

My thoughts are the same as views and deb. If he never stopped the pramipexole completely, his symptoms will still be worse than they should be.
If he did stop it completely for two weeks, then his symptoms are bad enough that he needs more. It also sounds like his day has shifted such that midnight to 7 AM is his body's "evening" (to early night), when WED/RLS symptoms are worst. The shift is very common, almost inevitable I'd guess, just a normal response to being unable to fall asleep at a normal time. In my experience it is very hard to shift back to a normal circadian schedule.

He has stopped it for a total of 3 weeks in the past. When he restarted the pramipexole he restarted at 0.125 mg, and sometimes will take 0.25 mg Takes it maybe 3-4xweek,but it doesn't seem to be helping much. We don't know if it is making things worse or better. The last 3 days he has had a total of 6 hours of sleep - none last night, with pretty severe RLS symptoms, which he hasn't experienced for a while. Usually the RLS is enough to wake him, but he can still read. Last night was pacing. For the past 2 nights he took an additional 5 mg Methadone at 7 pm in addition to the 20 he takes in the morning. That didn't help either.

2restless, It sounds like your husband is nearing the end of the usual treatment options. I was looking at your older posts, and it appears that your husband never got an approved trial of IV Iron. Iron Gluconate (the preparation he was getting last year) is considered by the International Restless Legs Syndrome Study Group to have inadequate evidence to recommend it. Not only that, if used, the recommended dosing schedule is one dose every 5-7 days for 8 doses, not at all the one dose per day you mentioned previously. I think it is time to re-evaluate the iron situation.

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). Note that the blood tests doctors usually do to check for low iron (ferritin test) only checks 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. Injectafer is the only iron preparation that had enough clinical study evidence to recommend it. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub

I think you may be on onto something. It has been about year since he had his iron infusions. I can't remember what type he had, but will find out when we see his doc next week. I do remember that they researched what was best with RLS. One that they wanted to do was not available. I mentioned another iron infusion to his doc in November - we checked a ferritin and because he was still 272 he did not want to do it, even though evidence shows that if < 300 it is OK. I will insist on the iron dextran or ferric carboxy-maltose this tie around. We also should be sure to recheck the iron panel 8 weeks later so we know what the baseline is for relief of symptoms. Thanks for your help. What a miserable disorder this is.

2restless wrote:... I will insist on the iron dextran or ferric carboxy-maltose this tie around. We also should be sure to recheck the iron panel 8 weeks later so we know what the baseline is for relief of symptoms. Thanks for your help. What a miserable disorder this is.

Don't get anything except Injectafer (ferric carboxymaltose).

I am trying to get an infusion of carboxy-maltose for my husband. His doctor is fine with it and he falls into the requirements fro infusions as far as his transferrin saturations and ferritin levels are (<300 and < 45%). The problem is twofold: first, the infusion center doesn't have it but has something that "is exactly the same thing." I don't know what that is,but will be checking into it and will know more tomorrow. (she spoke with my husband). Second, she is telling me that medicare will not pay for it as it is not FDA approved and each infusion is $2200. Last time he had an iron infusion we used something different than caboxy-maltose, he had 7 or 8 infusions total over several weeks, and it was covered by medicare.
So, I am wondering how others of you have gotten carboxy-maltose infusions and if you had to pay out of pocket for them. I wonder how Dr. Buchfuhrer gets them for his patients? Thanks for your help.

I am about to find out per my insurance, 2restless - but I have a market insurance, not medicare. I paid cash for my first one. My second one, my ferritin was quite low and I had a pretty decent insurance company. This time my ferritin is around 200 (guessing, it was 260 8 months ago and I had an infection at the time), so it will be interesting what they say/do. I do have Dr. B; I just looked at the referral and he coded it as anemia and restless legs.

He should investigate if Lyrica is maybe triggering some RLS symptoms. In my own experiments it turned out that Lyrica can trigger some horrible symptoms.

Other secenarios: as others have suggested he still might be augmenting or he simply needs a higher dose of Methadone.

I've never heard of Lyrica triggering RLS symptoms. Do you have some research I could read to investigate this? Anyone else ever hear of this. He has been on 150 mg bid now for about 18 months. I don't know if it ever helped or not - very hard to tell.

2restless wrote:I am trying to get an infusion of carboxy-maltose for my husband. ...So, I am wondering how others of you have gotten carboxy-maltose infusions and if you had to pay out of pocket for them. I wonder how Dr. Buchfuhrer gets them for his patients? Thanks for your help.

Mine were covered by my medicare advantage plan (UnitedHealthCare AARP MedicareComplete Secure Horizons), except for a $250 copay. What did you find out about the "just the same" medicine?

The IRLSSG consensus guidelines only recommend ferric carboxymaltose based on clinical studies. Reading between the lines, it appears that low molecular weight dextran (LMW Dextran, InFeD) had been used with positive results, though there are no clinical studies supporting its use. Be sure you do NOT get iron sucrose, it is listed as possibly NOT effective, distinctly worse.