Good News with IRON...: Hello my dear... - Restless Legs Syn...

Restless Legs Syndrome

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Good News with IRON...

Smaslow profile image
42 Replies

Hello my dear RLS friends. Last nite I took 2 iron capsules w/ orange juice at nite and went and bought 100.00 some dollars worth of food that is high in iron and have been eating it at every meal. I took a time released oxy about 7pm and then a half a Percocet around 4 am ,as my legs began to have a fluttering feeling allover. This helped put me back to sleep. I slept almost 7 hours and felt amazing and so rested. Today I went and saw the dr. Who prescribed Mirapex that I will try tmro if my Legs start to flutter.... dr says to start the meds slow and work my way up on the dosage . I will keep you all posted. My exhausted feelling was not bad today. I no longer am taking Prozac It took me over a year to get off it and this week was my last pill . I quit my every other day crestor as well . Wishing all good days ahead ...😘

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Smaslow
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42 Replies
Madlegs1 profile image
Madlegs1

It is the oxy that is giving you the relief.

If you are starting a dopamine agonist (DA) ,be very careful not to keep increasing the dose,. See augmentation.

0.25 is regarded as the max dose for Mirapex.

LotteM profile image
LotteM in reply to Madlegs1

I second Madlegs. My thoughts exactly.

Smaslow profile image
Smaslow in reply to Madlegs1

I was going to to not take the oxy and just take the mirapex. What do u think about that

Joolsg profile image
Joolsg in reply to Smaslow

Read about augmentation on this site before you take the Mirapex. After you have read everything, you will at least know what to look out for if you do decide to take Mirapex.

As madlegs and Lotte state, do not take more than 0.25mg Mirapex, even if the doctor suggests it.

Yakester profile image
Yakester in reply to Smaslow

Be very aware that side effects of mirapex! It is an insidious medication. I’m currently experiencing shortness of breath, muscle aches, compulsivity, anxiety and depression. What works best for me is hydrocodone as needed. Have to figure out a way to get off of mirapex.

Restlesssinger profile image
Restlesssinger in reply to Smaslow

That's the opposite of what I've learned on this forum over the past months. The most up to date info is that a small dose of opiates is more helpful in the long run than taking drugs such as Mirapex, which will eventually lead to the dreaded "augmentation." Best wishes!

Smaslow profile image
Smaslow in reply to Madlegs1

Now I’m scared my script says take 1/2 tab for 4 days and then increase slowly if needed in 4 day incriminates. But I still don’t know if I should take the oxy

Smaslow profile image
Smaslow in reply to Smaslow

Where do I find the augmentation info

Madlegs1 profile image
Madlegs1 in reply to Smaslow

Either Google it or search here. Top right button "more" drop down to "search".

Madlegs1 profile image
Madlegs1 in reply to Smaslow

rls-uk.org/news/augmentation

LotteM profile image
LotteM in reply to Smaslow

In one of your previous replies, you said you still had 40mg ER tablets of oxy. If you have been taking these, especially for more than a few days, you will have to wean off tem slowly. The decrease in dose may cause an temporary increase in your rls symptoms. Your current dose of oxy, if it indeed is 40mg ER, is rather high too. Your doctor should know and should have warned, but maybe she doesn’t know you have been taking these (old) tablets?

See this paper on the use of opioids for RLS: mayoclinicproceedings.org/a...

And this one for a good overview of the use of medicines to treat rls: ncbi.nlm.nih.gov/pmc/articl...

Smaslow profile image
Smaslow in reply to LotteM

I totally agree with you as far as weaning off the oxy slowly in fact I cut my oxy in a half and going to take half a dose less for about7 days and see where that takes me . I look so forward to the day where I no longer need it . So tired of being tired . Thks muchfor all your input . It helps me alotin making healthy choices.

Do you know if mirapexis a medication that can be taken in a very small dose when RLS happens on any given nite? Or do I have to build up on it . I wish there was that option that when my legs go out of control i can take something

LotteM profile image
LotteM in reply to Smaslow

Yes, you can with mirapex. Contrary to what was the belief for very long. The only thing about taking a med on an ‘as need’ basis, is that once the RLS starts it is often harder to control than taking the med before the symptoms start.

I hope the half dose of oxy works for you, and even lower doses after that.

involuntarydancer profile image
involuntarydancer in reply to Smaslow

If you are on extended release oxycodone or any form of slow release you should definitely not cut them in half. All the dose could be in one half and the other have only the formula for ensuring that the drug gets absorbed slowly in your gut. You could very easily swamp your system with 40mg (if that is indeed the strength of your tablets) oxycodone all in one go which is potentially very dangerous.

nightdancer profile image
nightdancer

Agree with madlegs. The pain meds are what is helping. It takes a VERY long time to build up one's iron/ferritin level with oral iron, whether it is in food or pills. :)

Smaslow you may be one of the few of us that get near immediate relief from taking an iron supplement before bed on an empty stomach. I take a supplement called ferrous bisglycinate and no longer need codeine. For some reason the other kind of iron supplements don't seem to do the trick for me like ferrous sulfate. You may not even need the oxy or the Mirapex if the iron works for you? On a really bad night I will not only take the ferrous bisglycinate in tablet form before bed but I will put an iron patch on that is time release over 8 hours so that I don't wake at 4am with RLS. An article from Dr. Early (a RLS specialist) confirms the fact that the available iron in our bodies has a circadian rhythm, kind of the way melatonin does I guess. Only melatonin rises at night while the available iron drops. So taking iron before bed makes a lot of sense. The article also talks about the fact that despite normal "stores" of iron there might be specific tissues and organs in the body that are iron deficient. In the case of RLS it seems that despite normal iron stores our brains are iron deficient always. And it seems from the article that they are looking at ways to remedy that brain iron deficiency. It seems that some of us have found the remedy by taking a very bioavailable form of iron that gets to our brains when we really need it...in the evening. It's a simple enough test. As soon as you feel RLS coming on in the evening take the iron. For me that's about 9pm. If you're like me the RLS will go in about an hour of taking the iron and you'll be ready for bed. If the RLS doesn't go then it sounds like you're well supplied with other meds that will get you a good night's sleep.

rls.org/file/member-publica...

LanaCSR profile image
LanaCSR in reply to

How much iron ferrous bisglycinate do you take each dose?

Smaslow profile image
Smaslow in reply to LanaCSR

I take a 25 mg and a 28 mg capsule w/ Orange juice

LanaCSR profile image
LanaCSR in reply to Smaslow

Thank you! I think I'll try it. Even though my serum ferritin level is over 100, I am intrigued by hearing that our brains and other tissues and organs in the body can still remain deficient. Wish me luck!! :-)

Smaslow profile image
Smaslow in reply to LanaCSR

Yes,,, good luck . 👍

in reply to LanaCSR

I too take a 25mg tablet of "Solgar Gentle Iron." Really quite reasonable in price too.

LanaCSR profile image
LanaCSR in reply to

Thank you!!

Smaslow profile image
Smaslow in reply to LanaCSR

Keep me posted on how things are going hopefully these iron supplements will work for us . That would be wonderful wouldn’t it. 👍

LanaCSR profile image
LanaCSR in reply to Smaslow

Oh, I pray it would be that easy! Unfortunately, it hasn't been that easy for me with anything else I've tried except for the meds that eventually augment...ugh!!

Smaslow profile image
Smaslow in reply to LanaCSR

I just want to be off the oxy so bad . I do not like it

in reply to LanaCSR

It's really quite interesting. There's a fair number of people that are helped in one way or another by long term use of iron with the end game of raising their iron stores but only a small subset of people who get immediate relief from their nightly iron. Sometimes I wonder if more people would get relief this way if they took ferrous bisglycinate rather than ferrous sulfate and if they took two to three tablets rather than just one. I've taken two on occasion. All of this of course has to be with doctor's permission. Although if your doctor prescribes taking two to three iron tablets a day for low iron stores not sure what difference it makes if you take them at the same time.

Smaslow profile image
Smaslow in reply to

I have been taking 2 - 28 mg caps w/ orange juice every nite and I sleeping and no restless legs the past 3 nites 👍

in reply to Smaslow

Yes it's quite strange and wonderful. I truly believe that a lot more people would get similar relief if they found the right amount of iron to take each night and the right kind. For some the iron patch may be best. I find though with the patches it doesn't deliver that big kaboom of relief. You may have to wear it for three hours before it relieves the RLS. But it may provide longer sleep time relief so maybe a combination of both for some people. I think some people try one capsule of the ferrous bisglycinate, don't get relief, and give up. They may need two or even three capsules. But I personally would try three capsules for just one night. If three doesn't provide complete relief (on an empty stomach of course) then I would assume that I'm just not one of those people for whom iron works immediately on the RLS.

Smaslow profile image
Smaslow in reply to

I agree with you totally. I’m very thankful to have met you on this site, and having you share w/ me ideas to try, that have helped me so much. I hope between the two of us we eventually catch up on all our lost sleep 😴

in reply to Smaslow

Same here. I hope one day you will only need the iron for the RLS. I hope the same for everyone on here especially since this site is where I learned about it. But I know that is not possible. It seems true only for a lucky few.

Smaslow profile image
Smaslow in reply to

Wonderful nite !!! I slept 7 hrs and 14 mins . STRAIGHT THROUGH ..... what a great morning I’m having. I feel like the “ Energizer Bunny “ 🙊

in reply to Smaslow

Smaslow is that with or without the Oxy?

LotteM profile image
LotteM in reply to

I wondered the same thing....

Smaslow profile image
Smaslow in reply to

As much as I want to quit oxy I have got to go slow. As I have said In my previous posts I have been on it for a long tine for my RA and I’m trying to wean off being that my RA is under control... I have been taking half my dose of 40 mg in the morn plus 1 iron supplements w/ oj and then half a dose at nite . Last nite I never took that nite time half dose of oxy . I took 2 iron supplements w/ oj and half of 2.5 mg mirapex . that was it.

All the time I have had RLS , I have been on High doses of oxy periodically for the RA . So if the oxy didn’t help RLS then, it must be the adding of iron and iron rich foods to my diet wouldn’t you think ! Plus of course the mirapex as well. I have no intention of raising the dose of mirapex either. I would like to be able to take it in an as needed basis once I get my sleep patterns normal. Am I making sense!

Smaslow profile image
Smaslow in reply to Smaslow

Oh and I also drink a couple cups of Sleepytime tea w/ a slice of an orange in it ... so confronting and relaxing .

rsoular profile image
rsoular

I also get immediate relief from iron (I take 40 mg of Proferrin with no orange juice) and it limits my RLS IF I haven’t eaten food triggers that day (decaf coffee and wheat are my triggers so far). I have managed to stay off DAs and opioids. My ferritin was 13.5 and I am working to build it up, but I depend on the immediate iron relief to sleep. Works 80% of the time. Good luck!!

Smaslow profile image
Smaslow in reply to rsoular

How did you find your trigger foods? Did u journalize every thing you ate?

rsoular profile image
rsoular in reply to Smaslow

Yep, I started with rice and fish for a few days and I didn’t have any symptoms those nights when I took the iron.And then ever since then I’ve been adding one food per day, And when I get symptoms I figured that could be a trigger.. I don’t know how scientific it is because there have been days when I’ll eat only from my safe list and I still have triggers. But in general if I stay on my safe food list and take my iron 80% of the time I can sleep just fine. I got the idea from Carl the guy who helps RLS suffers with the relaxis pad. His experience has shown that when holidays roll around people call with way more RLS triggers. He also says that many people will get the stomach flu for for five days and eat nothing and their symptoms will go away.

in reply to rsoular

Rsoular have you ever noticed whether the time of night that you eat the food has any effect or even the quantity? The later I eat it seems the worse the RLS. And overeating at the evening meal is bad as well. If I could eat lightly and be done eating by around 6:30pm I believe it would go a long way towards minimizing RLS symptoms.

rsoular profile image
rsoular in reply to

No I haven’t noticed that but I will add it to my practice and see if it helps.

Smaslow profile image
Smaslow

Wow,,, that’s interesting.

btthemd profile image
btthemd

For RLS, Iron is taken if lab results show you need iron. Most people tested don't need the additional iron and it does no good. In fact it can cause some heart problems. (look up iron and heart problems.) So don't take high doses of iron unless your doctor has taken the ferric tests and they have shown you need the added iron.

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