New Member

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
wkpalley
Posts: 4
Joined: Tue May 07, 2019 2:20 pm

New Member

Postby wkpalley » Wed May 08, 2019 7:23 pm

Hi. I just joined this week. I've had RLS for a few years but only started Pramipexole about 6 months ago. It works well (except for the short term memory problems). However, I do not want to be on the medication for the rest of my life (I'm 63). Thanks to this Foiundation and message board I read up on the low iron subject. I asked my PCP to run blood tests for this. He agreed and the results showed me to be in the "low/normal range." The doctor suggested I take 325 mg of iron per day. Has anyone gone this route, increased their iron level sufficiently enough to stop the Pramipexole?
I would appreciate any and all advice. Thanks.

stjohnh
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Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New Member

Postby stjohnh » Wed May 08, 2019 8:10 pm

wkpalley wrote:Hi. I just joined this week. I've had RLS for a few years... He agreed and the results showed me to be in the "low/normal range." The doctor suggested I take 325 mg of iron per day. Has anyone gone this route, increased their iron level sufficiently enough to stop the Pramipexole?
...



Hello wkpalley and welcome to the RLS forum community. Sounds like you already have some good info. The likelihood of you being able to stop the pramipexole is mostly dependent on how low your ferritin level is. Try to find out the actual number. The closer it is to 20 the more likely oral iron will help. If it is above 75 there is very little chance it will help. Let us know your ferritin level. It will likely take several months to get your ferritin up to 75 if it is much below that.

If after several months of oral iron your ferritin remains below 100 and you still have RLS symptoms, you would be a good candidate for IV iron infusions, which have a much greater likelihood of helping you get off the pramipexole.
Blessings,
Holland

ViewsAskew
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Re: New Member

Postby ViewsAskew » Thu May 09, 2019 6:14 am

One thing to keep in mind...people who have been successful in such things leave us and we never see them again :-). Most of us who are here regularly are the ones who have stubborn cases, who have difficulty tolerating medications, etc.

I was able to reduce my medication with infusions. Taking iron didn't increase it enough for me. My SIL is one of those people who can just take iron and her RLS goes away - but she never needed medication.
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.

wkpalley
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Joined: Tue May 07, 2019 2:20 pm

Re: New Member

Postby wkpalley » Fri May 10, 2019 1:15 am

Thanks Holland!
My ferritin level is 58. Do you think the oral iron will help?

stjohnh
Posts: 883
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New Member

Postby stjohnh » Fri May 10, 2019 1:50 am

wkpalley wrote:Thanks Holland!
My ferritin level is 58. Do you think the oral iron will help?


Well, that is in the maybe range. Iron is cheap and easy to try, so you definitely should take it for at least two months. 65mg iron (as 325mg Ferrous Sulfate) +500 mg vit C on empty stomach daily. Also, your doc will insist on a trial of oral iron before considering IV Iron.
Blessings,
Holland

badnights
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Re: New Member

Postby badnights » Sat May 18, 2019 5:19 am

I think the oral iron stands a very good chance of helping you. The conventional knowledge is that absorption of iron is self-limiting; absorption is inhibited if there is already lots of iron in the blood. But we don't actually know what lots is, we know even less about how ferritin levels reflect that, and probably individuals differ in how they absorb iron. I take 3 pills a day. Since I was sure that I couldn't possibly be absorbing it (based on the common knowledge), I tried cutting it back a number of times over the years. Every time, after 3 or 4 weeks my symptoms worsened. Every time, after I increased the dose again, 3 or 4 weeks later my symptoms improved again. I only tried this 4 times, so it's possible that every time, something else was coincidentally worsening and improving.

But I spoke with Chris Earley and Richard Allen who pioneered the treatment of WED/RLS with IV iron, last September at the RLS Patients Symposium put on by the Foundation. Their reaction to what I just told you was not one of surprise - basically they said everyone's different and the effect might have been real.

All that to say - - - YES! try the iron. In fact try two pills a day (together) - with the C, on an empty stomach if possible. Then get your ferritin tested again after a couple of months.
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.

wkpalley
Posts: 4
Joined: Tue May 07, 2019 2:20 pm

Re: New Member

Postby wkpalley » Tue Jun 04, 2019 1:46 pm

Thanks so much for your insight. One more question...if, after a couple of months of oral iron, my ferritin level increases to a good level, what would happen next in regards to my Pramipexole? Would I stop taking the Pramipexole immediately? Would I slowly cut it down?

stjohnh
Posts: 883
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New Member

Postby stjohnh » Tue Jun 04, 2019 2:43 pm

wkpalley wrote:Thanks so much for your insight. One more question...if, after a couple of months of oral iron, my ferritin level increases to a good level, what would happen next in regards to my Pramipexole? Would I stop taking the Pramipexole immediately? Would I slowly cut it down?


After getting your ferritin over 75 you can try to slowly decrease your pramipexole dose. The dose you want is the dose that provides acceptable control of your urge to move (jumpy legs). That means you should feel a little urge to move most evenings, but not enough to keep you from sleeping or participating in social activities. You do NOT want to eliminate all urge to move symptoms. If you eliminate all urge to move symptoms you are running an increased risk for augmentation.
Blessings,
Holland

ViewsAskew
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Location: Los Angeles

Re: New Member

Postby ViewsAskew » Tue Jun 04, 2019 6:38 pm

wkpalley wrote:Thanks so much for your insight. One more question...if, after a couple of months of oral iron, my ferritin level increases to a good level, what would happen next in regards to my Pramipexole? Would I stop taking the Pramipexole immediately? Would I slowly cut it down?


Keep in mind that we vary tremendously as to what is a "good" level. And, it doesn't work for some of us. SO! two things. This is one of the hardest things, in my opinion. You have to rein in that hope a bit. I see so many of us sure that this will do it, that we will be one of the ones...yet sometimes we are not. Also, a bit higher may work, and if that doesn't, an infusion may. See what I mean? Always another way to be hopeful....and knocked down, lol. (dark humor)
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.

Rustsmith
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Re: New Member

Postby Rustsmith » Tue Jun 04, 2019 7:33 pm

One more question...if, after a couple of months of oral iron, my ferritin level increases to a good level,


I am a case in point to Ann's comment. When I was first diagnosed with RLS, my ferritin level was 42. I started taking oral iron 3x day with vitamin C. After about 6 months, I think it was in the high 70's, so I dropped back to twice a day. Somewhere along the line, it got up to 150, so I dropped to once a day and skipped a few days. Well, after about five years, it got up to 650 and stayed there for over a year. Throughout all of this, my RLS remained severe. I finally stopped taking iron last year. I will get it checked later this week to see how far it has fallen, but still, my RLS has not been helped.

The doctors at John Hopkins say that you cannot use oral iron to go much about 100, but as Ann said, we are all vary tremendously.
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.

wkpalley
Posts: 4
Joined: Tue May 07, 2019 2:20 pm

Re: New Member

Postby wkpalley » Wed Jun 05, 2019 1:22 pm

stjohnh wrote:
wkpalley wrote:Thanks so much for your insight. One more question...if, after a couple of months of oral iron, my ferritin level increases to a good level, what would happen next in regards to my Pramipexole? Would I stop taking the Pramipexole immediately? Would I slowly cut it down?


After getting your ferritin over 75 you can try to slowly decrease your pramipexole dose. The dose you want is the dose that provides acceptable control of your urge to move (jumpy legs). That means you should feel a little urge to move most evenings, but not enough to keep you from sleeping or participating in social activities. You do NOT want to eliminate all urge to move symptoms. If you eliminate all urge to move symptoms you are running an increased risk for augmentation.


Thanks for the advice. I am currently taking .25 mg of Pramipexole twice a day. To your point, I do get a couple of urges a day to move but they come and go quickly.

badnights
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Location: Northwest Territories, Canada

Re: New Member

Postby badnights » Sat Jun 08, 2019 5:25 am

It\'s best to feel the symptoms at times, even daily, as long as they don't interfere with sleep. People tend to find that complete control of symptoms leads rapidly to a worsening of the condition and need for a dose increase, whereas stopping short of complete control is a situation that can be maintained for much 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.

Yankiwi
Posts: 386
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: New Member

Postby Yankiwi » Sun Jun 09, 2019 2:38 am

It's best to feel the symptoms at times, even daily, as long as they don't interfere with sleep. People tend to find that complete control of symptoms leads rapidly to a worsening of the condition and need for a dose increase, whereas stopping short of complete control is a situation that can be maintained for much longer.

I totally agree. Trying to completely get rid of symptoms only leads to trouble.


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