New to RLS forum

[leo_sch]

Hello everyone,

I decided to join this forum just now, but I have been reading/following many of its members and their struggle with RLS. I have had RLS for many years without knowing that it was a disease. My father had it and my sister has it. We always thought it was something genetic (which is) and that we could not do anything about it - just endure and live with it. Fortunately, thanks to many internet sites and especially this forum, I have learned a lot about RLS.

I was diagnosed with RLS 2 weeks ago and I started with Pramipexole 0.125mg. It works for me at this dosage and I have decided that I will stay on this dosage (no increases). My Ferritin levels: 90, sometimes 105. Never under 90. Sometimes I think that Magnesium, fish oil and Coenzyme Q10 helps. With Pramipexole I am RLS-free. I hope this will last because I'm not willing to increase the dosage no matter what.

Best wishes,
Leo

[Polar Bear]

Welcome and it's good to hear that our discussion board has provided useful information and support.

You are very wise to keep your pramipexole dose as low as possible as it is one of the drugs that can cause augmentation. If there ever came a time that it no longer worked efficiently for you, there are other drugs that can be successfully added in low doses. Many of us use such a cocktail.

In the meantime I am very happy that pramipexole is working well for you and hope it lasts for a very long time.

[leo_sch]

Thank you very much, Betty

[stjohnh]

Leo, I'm happy you are doing well on the pramipexole. It sounds like you have learned quite a bit about RLS already. I agree with your plan to keep the max dose at 0.125mg. Now is the time to start talking to your doctor about Iron, especially IV Iron. Chances are excellent that at some time in the future the 0.125mg won't control your symptoms. Best to go straight to IV Iron when that happens, and if you repeatedly bring it up to your doc, the doc will be primed to possibly go ahead and do it for you.

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). 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 tests doctors usually do (ferritin test) to check for low iron only check 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://www.sciencedirect.com/science/a ... via%3Dihub

[leo_sch]

Thank you, Holland.

I am very lucky for having a very understanding GP. She listens. Every time I need to do some blood work she asks me what I want to check besides the usual parameters (cholesterol, liver function, etc.). Then I am free to say: Magnesium, Zinc, hormones, whatever I am sure that she will do IV iron with no hesitation once I tell her what I have learned in here: namely, that Ferritin levels should be over 100 in patients with RLS. This is important, because last time she looked at her screen and said: Well, your ferritin level is 90. This is good. Only later I learned that this number should preferably be higher. I have learned this and now it's her turn to learn it too

Anyway, I have a question: How can we know that RLS is caused by BID if we can't measure it?

Thank you in advance.
Best regards,
Leo

[stjohnh]

Anyway, I have a question: How can we know that RLS is caused by BID if we can't measure it?

BID (Brain Iron Deficiency) has been shown to be the cause of RLS by numerous methods. The basics are:
1) Autopsy studies of brains of patients with RLS show low brain iron.
2) Functional MRI, tagged CT scans, etc. show low brain iron in RLS patients.
3) Animal models with low brain iron (from fruit flys to rats) show RLS like symptoms.
4) Many patients with RLS and no evidence of blood iron deficiency get better when given IV iron.

[leo_sch]

Thank you, Holland

[badnights]

With Pramipexole I am RLS-free. I hope this will last because I'm not willing to increase the dosage no matter what.

I hope you can get IV iron; maybe then you can forgo the pramipexole completely. If you keep taking it, however, then as soon as you notice signs of worsening (spreading to arms, starting earlier in the day, etc) that;s when you need to take a break from the pramipexole for a week and a half or two weeks.

[leo_sch]

Thank you, Beth

[Bridgercan]

Hey Leo-Welcome to the forum! It sounds like you’re on the path for getting relief and understanding this disease. As you’ve probably learned there’s no rhyme or reason as to what helps one person doesn’t for another—another maddening aspect of the disease. But learning all you can and getting in tune with your body is I think your best defense. That and finding a doctor who is knowledgeable and is willing and able to work with you as a team.

Your mentioning your dad having had it and it being something to be endured brought back sad memories of my dad and how he of the Depression/WWII generation stoically, silently suffered through his “jimmy legs.” He was able to find some relief sleeping in a lazy boy recliner, but being the 70s and 80s there was hardly awareness of the disease. My dad toughed it out, like he did with all the challenges life threw at him.

So like he said many a time to me, hang tough.

Best of luck to you on your journey and please continue to share, because just one tip, idea, success, or even failure can very well help someone else.

[leo_sch]

Thank you, Bridgercan

Yes, memories. I remember as a child giving my dad foot massages because I was convinced that he was suffering a lot. Maybe, unconsciously I was preparing myself for the massages I would give myself much later in life

Best regards,
Leo

[Slanecd]

Hi all
I had RLS when I pregnant on and off, about a year ago it came on with a vengeance. I have it every night and it wakes me up as well. I am a 43 year old woman and I exercise about five days a week. I take hot baths and finally found something that is working for me. I started on gabapentin and then Horizant but they didn’t work well. Now I am on the Neupro patch. It’s pretty good but there is some nausea. I am hoping it lasts as I am fearful it will come back every night. Thanks

[stjohnh]

Hello Slanecd, Welcome to the RLS community. This is the place to find comfort, advice, and knowledge. People here get it when you want to complain about how RLS is ruining your life.

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 (ferritin test) to check for low iron 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://www.sciencedirect.com/science/a ... via%3Dihub

[Bridgercan]

Thank you, Bridgercan

Yes, memories. I remember as a child giving my dad foot massages because I was convinced that he was suffering a lot. Maybe, unconsciously I was preparing myself for the massages I would give myself much later in life

Best regards,
Leo

Me too! I was older, late twenties, when I suggested to my dad a foot massage might help. He was a little weirded out by the idea, but it seemed to help him relax some, and it helped pass the time. Later on, when my mom was plagued with nighttime leg cramps, I would massage her feet and calves. It felt good to be able to ease their misery, if just for a bit, and put our differences aside. Little did I know the practice I was getting for massaging my legs decades later! Thanks, Leo, for helping connect some random memories!

[badnights]

Hi slanecd

I take hot baths and finally found something that is working for me. I started on gabapentin and then Horizant but they didn’t work well. Now I am on the Neupro patch. It’s pretty good but there is some nausea. I am hoping it lasts as I am fearful it will come back every night.

I'm glad the Neupro is working for you. This disease is so hard to live with; being unable to sleep and being tortured while you're at it - and no one really understands!

Neupro is a medication in the dopamine agonist family. Those medications are very effective but their effectiveness tends not to last; they will eventually cause a phenomenon called augmentation. Most doctors are still unaware of this. Augmentation is a worsening of the disease caused by the very medication that initially helped it. It is more likely to happen with the shorter acting dopamine agonists like pramipexole and ropinirole, but it can still happen with Neupro. Even if your doctor is aware of augmentation, he/she may have heard that it doesn't happen with Neupro; that thinking has been proved wrong.

Your best protection against augmentation is to boost your iron stores. As Holland explained, you really want to boost your brain iron stores, but there is no direct way to do that, so we generally take oral iron supplements or intravenous iron, raising the iron concentration in our blood so that more of it gets across the capillary walls into the brain. Some people are able to correct their WED/RLS simply by taking iron - no other medication needed! If you are not in danger of iron overload (check with your doctor), you should probably be supplementing with iron (preferably infusions from a knowledgeable WED/RLS doctor, but oral iron at least).

There is a measure of your body's iron stores, a protein called ferritin that is present throughout the body's tissues but is most easily measured in the blood. If your body stores of iron are low anywhere - for example, in the brain - the ferritin concentration in your blood will be low.

Please get your doctor to order a full iron panel for you, including a ferritin analysis, which is not part of the usual workup. A ferritin value under 100 indicates that you are at a high risk of augmenting on the Neupro. Meanwhile, keep your Neupro dose as low as possible.

A high ferritin doesn't mean you're ok, because a high ferritin can be caused either by high iron stores or by inflammation somewhere in the body. So if your ferritin is over 100, you don't really know if you need to supplement with iron or not. The fact that you have WED/RLS suggests that you do.

I hope this all isn't too complicated. The main things are 1. to start getting some iron into you, as long as you're not in danger of iron overload. and 2. to keep your Neupro dose low enough so that you feel some symptoms. I hope you can get rid of it completely! maybe the iron will allow that.