Just looking for help like most of you.

[stteb]

I have been lurking here and on other sites, hoping to find some path to reduce or eliminate if possible my PLMD. I think I have had it for many years, but was officially diagnosed with it during an in lab sleep study I had recently. They found mild sleep apnea which is now well controlled with CPAP therapy at a relatively low pressure, but I also scored a PLM Index of 108, with anything over 50 being considered severe.

I occasionally have brief periods of mild RLS shortly before going to sleep, but not bad enough or often enough to be a big concern, at least not yet. The PLMD though, starts shortly after falling asleep and usually lasts for 1/3-1/2 of the time I am asleep, slowly tapering off but never totally going away towards morning.

I am not aware of it usually while sleeping but I record my sleep with a small night vision camera which clearly shows both my legs as well as arms twitching and jerking, sometimes quite violently in a rhythmic pattern about every 15-20 seconds. My wife confirms this and it shows up in the flow rate pattern recorded on my CPAP machine.

When I review my CPAP report each morning, it usually indicates I had a great night of sleep with little or no breathing problems, but I feel tired most of the day. From what I have learned so far, I'm pretty sure I am never reaching or staying in the deeper sleep stages due to the PLMD.

My PCP has offered to start me on a low dose of Mirapex, but I declined due to the augmentation risk I learned about here and on other sites. I'm seeing him again today, armed with the Mayo Clinic Algorithm hoping he will agree to testing my iron levels.

Following the Mayo Algorithm Road Map (Box 1), if that comes back OK, then I'm not sure what else to do but start considering drug therapy in the form of Gabapentin if he will agree, but I would prefer to stay away from that if possible. My apnea is well controlled and I don't take any other meds except 10mg Lisinopril.

Anyone have any other ideas?

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

Just to repeat and add to the Mayo Algorithm on testing for ferritin. Ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.

PLMD is treated the same way as RLS.

[SueJohnson]

You were smart to refuse Mirapex. Ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin and pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin).

Remember this will treat your PLMD as well as your mild RLS.

[stteb in reply to SueJohnson]

Thank you Sue for your reply. Hopefully my doctor will be open to my suggestions and those of the Mayo Clinic.

[fiberglass]

stteb,

I am 84 and discovered Mirapex at 47 , so I have been taking it a long time. I started with 0.125mg. This low strength worked for about 3- 4 years then we moved to two 0.125 mg a day . I have gradually increased dosage and am now taking two 0.5mg -one in the morning and one in the evening. Sometimes on bad days I supplement with one gabapentin 300mg in late afternoon. After 47 years taking Mirapex it still works and I do not seem to be having any side-effects. I am an active 84 years, still driving and on the Board of my COOP condo building. Blood pressure is my primary other health issue. Hope this helps!

fiberglass

[stteb in reply to fiberglass]

Thanks for your comments and I'm glad that you get relief using Mirapex without the seemingly common augmentation issue.

I know for many, prescription drugs are the only treatment that gets lasting results, and that each person responds differently. I have been fortunate in my life so far to have not had the need for them, but as I age, they seem to be entering my life more.

I was pleased with my PCP's acceptance of the Mayo Clinic information and agreement that we should start with testing / treating with iron and only resort to starting a low dose of drugs if nothing else seems to help. Although he initially recommended Mirapex, he agreed that if needed, we should start with Gabapentin. I'm pleased with this course of action and thankful to have an understanding and open minded doctor.

Thanks again and hope all continues well for you.

[SueJohnson in reply to fiberglass]

If you are taking a total of 1 mg of Mirapex, you are taking twice the maximum amount and are suffering from augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. In your case your symptoms occur earlier in the day and you had to increase your dose.

This means you need to come off it which unfortunately is not easy.

Mirapex is no longer the first-line treatment for RLS, gabapentin or pregabalin is. It used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations.

However since you list respiratory depression, you need to talk with your doctor about gabapentin or pregabalin. It may be that you need to stay on Mirapex. Or it may be that you can take a low dose of gabapentin and reduce the Mirapex some. Otherwise you will keep having to increase it.

. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

[Magentayellow]

I was started on Mirapex about 25 years ago by my PCP at 1 pill lowest dose as need recently I am increased to 3 per day. It is unclear if I have Augmentation or not. When diagnosed nothing was said about iron levels but some years later I was found to have low levels and tried increasing with oral supplements but it hasn’t increased much so next step is IV infusion.

All this to say I definitely would check iron levels and increase those first. Good luck

[stteb in reply to Magentayellow]

Thanks for your reply and encouragement. I hope you can stay clear of any augmentation problems and that maybe an iron infusion would reduce the need for drugs. Good luck to you as well.

[collageartist52]

I will add my 2 cents about magnesium. There was a post or two several months ago on this forum, explaining how magnesium is a dopamine antagonist. All these years i had been advised to take magnesium supplements along with my mirapex or gabapenten at bedtime. Well, i am not on either of those meds anymore, but i did stop the magnesium at bedtime. I take it in the morning instead. It seems to interfere with the absorption of a number of medications, so i take it on its own. I get the benefits, and i do believe it has improved my situation. I now take low dose naltrexone 3mg at night, and it seems to cover almost all my RLS symptoms. I do have pain in my hips and sacrum at night, but that pain, which i used to think was part of the RLS, seems to be more widespread and i have been DX'd with fibromyalgia. My ferritin levels are very high, probably because we eat a largely carnivore diet.

[SueJohnson in reply to collageartist52]

It's great the naltrexone is working.

Magnesium is not a dopamine antagonist. If it were it would make RLS worse. It works better if taken at night. It doesn't interfere with the absorption of LDN. It needs to be taken 2 hours apart from iron but with a high ferritin that is not a problem for you. And taken 3 hours apart from gabapentin but again not a problem for you. And 4 hours apart from thyroid medicine.

[Munroist]

For clarity I’ve added this link regarding respiratory depression with gabapentin and pregabalin. Sue mentions this in her reply to fiberglass and recommends discussing with your doctor but I didn’t notice it at first so you may have missed it as well

fda.gov/drugs/drug-safety-a....