Restless Legs Syndrome (RLS) Discussion Board

Here is my story and dilemma with Restless Leg Syndrome. I’ve had Restless Leg Syndrome for 20-30 years. I’m 59 years old. I don’t recall when it started, but it could have been when I returned from living in Malaysia for a year where I had Irritable Bowel Syndrome – I no longer have this condition. I used Requip for many years, slowly increasing its dosage. About a year and a half ago I switched to Neupro due to my leg twitching happening throughout the day, not just at bedtime. The Neupro quickly stopped my daytime leg twitching altogether and decreased my nighttime leg bouncing as well. The medication change occurred months after a lumbar laminectomy for a drop foot. I was prescribed 1200mg of Gabapentin for post-surgical sciatic pain primarily, with an added benefit for my restless legs.

Within months of starting Neupro my nighttime leg twitching increased, so my neurologist increased my Neupro dosage upward to 3mg, 4mg, and currently to 6mg. Three months ago I started taking 325mg of ferrous sufate; it’s had no effect on my restless leg. I would like to add that I have peripheral neuropathy in both my arms and legs, evidenced via electromyography. While I have significant stenosis in my cervical and lumbar spine, my neurologist believes the peripheral neuropathy may be genetic or mere hypersensitivity. I likely had a prenatal stroke, evidenced via a brain magnetic resonance imaging. This may have resulted in dysphagia, a condition that’s more bothersome than debilitating. I also test positive with the Babinski reflex. In addition, I’ve had multiple orthopedic surgeries the past three years (labral hip reconstruction, lumbar laminectomy, basal joint arthritis, foot reconstruction due to arthritis), as well as carpal and cubital surgeries in both arms. As a competitive cyclist since I was a kid, I’ve attributed most of these surgeries to wear, age, and genetics. I have sleep apnea that’s still being resolved; I may need to treat central apnea in addition to obstructive apnea. Insomnia is also a problem.

When I started taking the 6mg Neupro patch about 4 months ago I also weaned off Gabapentin. I wasn’t thinking. Since my leg pain had gone away, my thought was that I no longer needed the Gabapentin. My leg twitching increased. I was then prescribed 600mg of Horizant. However, the Horizant did nothing for me and I stopped taking it a week ago.

Currently recovering from hand and foot orthopedic surgeries, I recently visited a new neurologist in Denver for my restless leg. Iron was discussed. Here are my ferrous levels over the years:

7-14-21: 87 ng/ml (measured after breakfast with a 325mg ferrous sulfate supplement)
5-17-21: 47 ng/ml
4-6-21: 56 ng/ml (started taking 325mg of ferrous sulfate)
4-21-16: 35ng/ml (general practitioner doctor likely assumed this value was normal)
2-19-16: 45 ng/ml

The new neurologist suggested either iron infusions or a higher dose of Horizant in addition to my 6mg of Nuepro. I’m leaning towards the iron infusion route, especially if my insurance covers the expense.
What do you think? Is iron infusion the best course of action, or is the Horizant route better? And why? Is my Neupro dosage too high? If so, what should I do about it? I abhor the idea of opioids. I hate them for my surgeries and wean off of them within a day post-surgery. They give me awful constipation; I’d much rather deal with surgical pain than constipation. In general, I’m anti-medication. I take levothyroxin along with my Neupro patch and ferrous sulfate, but nothing else. It’s too much. Am I heading down the right pathway with iron infusions? What else should I consider? Also, is my insomnia related to my restless leg, my apnea, or both?

Thank you.

Michael

Hi Michael - others will be along shortly with more info. I am taking a break from work and don't have a ton of time.

First, welcome - so sorry you need to be here, though. None of us want to go through this.

Most important, please look up augmentation as related to dopamine agonists. You are certainly augmented. It is when the medication itself increases symptoms. We have a bazillion posts about it on here, as most of us have never heard of it but come here with terribly increased symptoms and looking for a solution.

Infusions may indeed by a great thing to explore, but first is to get the augmentation resolved.

Insomnia - no idea at this point. Until the augmentation is resolved and your apnea is under control, it may be hard to figure out.

OK - I have to go back to work!

wacomme wrote: ↑

Fri Jul 16, 2021 2:32 pm

...Currently recovering from hand and foot orthopedic surgeries, I recently visited a new neurologist in Denver for my restless leg. Iron was discussed. Here are my ferrous levels over the years:

7-14-21: 87 ng/ml (measured after breakfast with a 325mg ferrous sulfate supplement)
5-17-21: 47 ng/ml
4-6-21: 56 ng/ml (started taking 325mg of ferrous sulfate)
4-21-16: 35ng/ml (general practitioner doctor likely assumed this value was normal)
2-19-16: 45 ng/ml

The new neurologist suggested either iron infusions or a higher dose of Horizant in addition to my 6mg of Nuepro. I’m leaning towards the iron infusion route, especially if my insurance covers the expense.
What do you think? Is iron infusion the best course of action, or is the Horizant route better? And why? Is my Neupro dosage too high? If so, what should I do about it? I abhor the idea of opioids. I hate them for my surgeries and wean off of them within a day post-surgery. They give me awful constipation; I’d much rather deal with surgical pain than constipation. In general, I’m anti-medication. I take levothyroxin along with my Neupro patch and ferrous sulfate, but nothing else. It’s too much. Am I heading down the right pathway with iron infusions? What else should I consider? Also, is my insomnia related to my restless leg, my apnea, or both?

Thank you.

Michael

Hi Michael,
I agree w Ann (viewsaskew). You should look into the augmentation information. Yes, your Neupro dose is too high. Likely you have augmented on the Neupro and will need to get off it.

Iron infusion is the way to go, if possible, even if your insurance won't pay. 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 Syndrome 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 test 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. Here is a link to the recommendations:
https://reader.elsevier.com/reader/sd/p ... 40A179/pdf

Insomnia is one of the major RLS symptoms, but there are lots of causes of insomnia. The insomnia of RLS genereally does NOT respond to the usual meds doctors prescribe for insomnia. There are two general groups of meds that help RLS insomnia: 1. gabapentin and similar meds-Lyrica and Horizant. And 2: THC (medical marijuana). For them to work however, the leg jumping must be first controlled.

For the long-run, I think you should try to get over the hesitation on using opioids. In general, RLS patients on opioids need much lower doses than used for chronic pain. Constipation can usually be controlled by proper selection of opioid, high fiber diet, and mild laxatives.

The fact that your neurologist suggested iron also means the doc may be open to new treatment plans for your RLS. Unfortunately, the suggestion that you increase the Neupro dose also suggests that the doc isn't aware of the augmentation problems Neupro (and the other dopamine agonists, ropinirole and pramipexole) cause, especially at higher doses. For now, I'd suggest talking to doc and 1. get the iron infusion. 2. keep current dose Neupro. 3. Increase Horizant dose (will make it a little easier to get off the Neupro and may help the insomnia). 4. Ask your doc about augmentation. Probably doc doesn't know about it, but hopefully will educate himself and be able to treat your symptoms more appropriately.

Plan on getting off the Neupro before too many more weeks have gone by.

I have several comments/suggestions:

1. The iron infusion is definitely the way to go. It doesn't work for everyone, but oral iron supplements haven't worked for you, your ferritin is low so you need to do something else. In the recent update to the consensus treatment document for RLS, iron therapy is recommended before trying any medication and infusions are recommended when oral supplements don't help.

2. You mentioned that you are taking levothyroxine. If you are taking it at the same time as you take your iron supplement, then they two cancel each other out and you don't benefit from either one. You need to take one of them between one set of meals and the other between the other meals.

3. The highest recommended dose for Neupro is 3mg. The 4mg patch can be used for some situations, such as preparing to switch to another class of meds.

4. You might want to give the higher dose of Horizant a try (if cost isn't an issue). But you need to keep in mind that once Horizant enters the bloodstream, it becomes identical to gabapentin. Horizant can work in situations where gabapentin either doesn't work or works erratically. But gabapentin shouldn't be able to help and Horizant not work. I take gabapentin and tried Horizant. I didn't switch because Horizant didn't work any better - for me.

5. I mentioned the new consensus document for treating RLS. This came out on July 1, so your neurologist may not have seen it yet. There were not any major changes to the meds recommended to treating RLS, but it has a lot of info that you will find very interesting and useful.https://www.mayoclinicproceedings.org/a ... 0/fulltext

6. As for insomnia, what you are experiencing can either be part of the RLS, the augmentation or it can be tied to the sleep apnea. The easiest part will be seeing what improvement you get with the CPAP treatment. Treating the augmentation should help. Treating the insomnia side of your RLS is usually done with gabapentin, Horizant or Lyrica, so getting that part of your RLS treatment can help. But insomnia is a complicated issue that doesn't always respond to pills. I recently started treatment with an insomnia specialist. It is too early to know if he will be able to help, but I am going to try.

Finally, where did you live in Malaysia? I used to travel to KL and the east coast of peninsular Malaysia on a regular basis. The biggest disappointment of my career was when my boss sat on the paperwork that would have transferred me to Malaysia.

Rustsmith wrote: ↑

Fri Jul 16, 2021 9:07 pm

I have several comments/suggestions:

1. The iron infusion is definitely the way to go. It doesn't work for everyone, but oral iron supplements haven't worked for you, your ferritin is low so you need to do something else. In the recent update to the consensus treatment document for RLS, iron therapy is recommended before trying any medication and infusions are recommended when oral supplements don't help.

2. You mentioned that you are taking levothyroxine. If you are taking it at the same time as you take your iron supplement, then they two cancel each other out and you don't benefit from either one. You need to take one of them between one set of meals and the other between the other meals.

I take my iron and levothyroxine at different times of the day, both fasted as much as possible.

3. The highest recommended dose for Neupro is 3mg. The 4mg patch can be used for some situations, such as preparing to switch to another class of meds.
I'm on a 6mg patch.

4. You might want to give the higher dose of Horizant a try (if cost isn't an issue). But you need to keep in mind that once Horizant enters the bloodstream, it becomes identical to gabapentin. Horizant can work in situations where gabapentin either doesn't work or works erratically. But gabapentin shouldn't be able to help and Horizant not work. I take gabapentin and tried Horizant. I didn't switch because Horizant didn't work any better - for me.

I only noticed the effects of gabapentin when I weened off of the 1200 mg; my leg jerks increased. I did not notice any benefit to the gabapentin (or Horizant) upon taking them. Perhaps both drugs worked, but it was subtle at best.

5. I mentioned the new consensus document for treating RLS. This came out on July 1, so your neurologist may not have seen it yet. There were not any major changes to the meds recommended to treating RLS, but it has a lot of info that you will find very interesting and useful.https://www.mayoclinicproceedings.org/a ... 0/fulltext

Thanks. I'll investigate.

6. As for insomnia, what you are experiencing can either be part of the RLS, the augmentation or it can be tied to the sleep apnea. The easiest part will be seeing what improvement you get with the CPAP treatment. Treating the augmentation should help. Treating the insomnia side of your RLS is usually done with gabapentin, Horizant or Lyrica, so getting that part of your RLS treatment can help. But insomnia is a complicated issue that doesn't always respond to pills. I recently started treatment with an insomnia specialist. It is too early to know if he will be able to help, but I am going to try.

I hope addressing the RLS and apnea curbs my insomnia. I really don't want to take more drugs.

Finally, where did you live in Malaysia? I used to travel to KL and the east coast of peninsular Malaysia on a regular basis. The biggest disappointment of my career was when my boss sat on the paperwork that would have transferred me to Malaysia.

I lived in Kerteh (east coast). I worked as a teacher for the kids of expat engineers from the USA, Canada, and Australia working offshore oil. Aside for my IBS the first half year I lived there I loved it!

Michael

I take levothyroxine in the middle of the night when I wake up for the first time. It's right on my bathroom sink in one of those weekly pill dispensers. By taking it in the middle of the night I am sure it does not interfere with my iron tablet.

Yankiwi wrote: ↑

Sat Jul 17, 2021 12:58 am

I take levothyroxine in the middle of the night when I wake up for the first time. It's right on my bathroom sink in one of those weekly pill dispensers. By taking it in the middle of the night I am sure it does not interfere with my iron tablet.

I take levothyroxine first thing in the morning (5-6 am). I drink decaf coffee in the morning, but no food until around noon. So I take my iron supplement around 10 AM.

If my insurance does not cover the cost of iron infusions, and from what I've read this is likely, what is the out-of-pocket cost of the infusions? I need two infusions, correct? And do I have a 50% chance that the iron infusions will do me any good? If the infusions are effective, how often are they needed?

Michael

A couple of items:

1) Regarding opioids - a post from Beth, "Most opioids for most of us here on the board who post about it cause alertness that makes sleep very difficult. Your methadone may be causing the same problem wih you - do you feel a sudden bizarre alertness 1-2 hours after taking it, even when just before htat you were deathly tired?" Besides the constipation, I previously didn't know why I hated taking opioids, but Beth's comment is it. I'm "buzzed" when I'm on opioids. So, while opioids may be a solution for my leg twitching, it seems like they would adversely affect my insomnia. So it seems like I'd be switching one problem for another. Please advise.

2) Regarding connection between RLS and insomnia - from the posts I've been reading it appears that there's a connection between RLS and insomnia. Is this correct? While I understand that leg jerking keeps one awake, many people here say that they still have insomnia even after they have their leg jerking under control. Why is that?

wacomme wrote: ↑

Sat Jul 17, 2021 12:59 pm

If my insurance does not cover the cost of iron infusions, and from what I've read this is likely, what is the out-of-pocket cost of the infusions? I need two infusions, correct? And do I have a 50% chance that the iron infusions will do me any good? If the infusions are effective, how often are they needed?

Michael

For the recommended Injectafer, in the USA, likely $2000-3000. Likely much, much less expensive elsewhere. Yes, 50/50 chance of working according to the literature. However, seems higher than that among the users posting on this board. If effective, most commonly, they need to be repeated about once yearly, varies from person to person. The first infusion typically lasts a shorter time than the subsequent infusions.

wacomme wrote: ↑

Sat Jul 17, 2021 1:24 pm

A couple of items:

1) Regarding opioids - a post from Beth, "Most opioids for most of us here on the board who post about it cause alertness that makes sleep very difficult. Your methadone may be causing the same problem wih you - do you feel a sudden bizarre alertness 1-2 hours after taking it, even when just before htat you were deathly tired?" Besides the constipation, I previously didn't know why I hated taking opioids, but Beth's comment is it. I'm "buzzed" when I'm on opioids. So, while opioids may be a solution for my leg twitching, it seems like they would adversely affect my insomnia. So it seems like I'd be switching one problem for another. Please advise.

2) Regarding connection between RLS and insomnia - from the posts I've been reading it appears that there's a connection between RLS and insomnia. Is this correct? While I understand that leg jerking keeps one awake, many people here say that they still have insomnia even after they have their leg jerking under control. Why is that?

In the milder forms of RLS, people first go see the doctor about this because the leg jerking ("urge-to-move") keeps them awake and if the jerking is controlled, they sleep fairly well. As the disease progresses, the separate insomnia symptom starts becoming more significant, so that even if the leg jumping is controlled they patient STILL can't get to sleep. It is not known exactly why moderate and severe RLS have a separate from the leg jerking symptom that interferes with sleep. RLS is a complex illness with many aspects still not understood. The insomnia likely is due to dysfunction of the glutamate/adensosine metabolism that has been documented in RLS patients.

As far as opioid alerting, you are not substituing one problem for another. The opioid treats the leg jerking (which must be first controlled to have a chance at sleeping) AND the insomnia of RLS. So if person with RLS doesn't have alerting from the opioid, he is home free, done, functional, feeling generally ok. Lots of people have no alerting with opioids. If alerting becomes a factor, that can be separatly addressed.

With respect to opioid alerting, this can be fairly easy to address when it occurs. There are long lasting opioids (methadone, tramadol and buprenorphine) that you take once a day. For those who experience alerting, you simply take the opioid at noon or in the morning instead of at bedtime. This allows the alerting side effect to wear off before it is time to go to bed, yet you still retain control of the urge to move part of RLS since the medication is still only half way between doses.

stjohnh wrote: ↑

Sat Jul 17, 2021 2:54 pm

In the milder forms of RLS, people first go see the doctor about this because the leg jerking ("urge-to-move") keeps them awake and if the jerking is controlled, they sleep fairly well. As the disease progresses, the separate insomnia symptom starts becoming more significant, so that even if the leg jumping is controlled they patient STILL can't get to sleep. It is not known exactly why moderate and severe RLS have a separate from the leg jerking symptom that interferes with sleep. RLS is a complex illness with many aspects still not understood. The insomnia likely is due to dysfunction of the glutamate/adensosine metabolism that has been documented in RLS patients.

As far as opioid alerting, you are not substituing one problem for another. The opioid treats the leg jerking (which must be first controlled to have a chance at sleeping) AND the insomnia of RLS. So if person with RLS doesn't have alerting from the opioid, he is home free, done, functional, feeling generally ok. Lots of people have no alerting with opioids. If alerting becomes a factor, that can be separatly addressed.

Thank you. This info helps a lot.

BTW - My neurologist is keeping me on 6mg Neupro and 600mg gabapentin for the time being. I'm in the process of setting up iron infusions (though still trying to decide if it's worth 2-3K if insurance doesn't cover it). From what I can ascertain from reading, the iron infusions are a preferred first step rather than directly heading down a high dosage (greater than 600mg) Horizant pathway. I just hate the 2-3K gamble for a 50/50 bet. However, if the iron infusions work, even partially, then this is the first-line defense against RLS, and meds on top of the iron infusions would be secondary (if needed). Am I correct is saying this?

Michael

I've been reading several posts. I'm wondering if it's worth exploring THC and Kratom rather than the prescription meds. I live in Colorado so cannabis is legal. I usually head down the standard pathway (I've never used cannabis) for meds, etc., but I sometimes wonder if these natural meds are less harmful to the body than the prescription meds. Thoughts?

Both THC and Kratom are effective for treating RLS. THC doesn't do much for urge-to-move, but clearly helps lots of people sleep. Kratom has some opioid like effects, helps urge-to-move, doesn't help sleep as much. I and many others on this forum have and continue to use these. As far as safety... Well no knows for sure, but both have been used for over 1000 years, and so far as is known, there aren't serious safety problems with either one. However... There also hasn't been much research about that.