Oral Iron instead of meds?

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meiatflask
Posts: 22
Joined: Sat Aug 10, 2019 10:29 pm

Oral Iron instead of meds?

Post by meiatflask »

I have been reading a lot about iron including some technical journal articles, and have attended a webinar. This has me thinking, but a bit of background before my question.

My background is that I have been tried numerous of the medications, most success in relieving symptoms with ropinirole or pramipexole. I am currently using pramipexole, for the past 8 months or so (had been taking ropinirole for a couple years before I switched) I had low ferritin first tested 11 months ago, began taking oral iron x2 +C daily, which increased my ferritin levels. I have continued taking the pramipexole. Symptoms are much reduced, I am in a “good period”, but still have occasional bad evenings.

My question is this: the research studies typically (but not always) have the patient stop using prescription medication when they begin taking iron, be it oral or IV. I have never considered iron as a replacement for meds, but only as a supplement to be taken in addition to the meds. Am I wrong here? Should I consider quitting my meds and only taking the iron? I am willing to give it a try, but thought I would reach out to the group first.

Does anyone have experience with iron only - instead of meds? Has anyone quit meds after starting iron- oral or IV?

Thanks,

Bill

stjohnh
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Location: Palo Alto, California

Re: Oral Iron instead of meds?

Post by stjohnh »

Bill,
The usual for IV iron is to continue regular meds, get IV iron, then a few weeks later, attempt to get off other RLS meds. That is what happened to me, I have had two rounds of IV Iron, and am about due for my next one. The IV iron allows me to be off other RLS meds for a while. I am currently taking low dose Kratom + THC to help me sleep. As the iron wears off, the first RLS symptom I notice returning is trouble sleeping. It takes another month or so for my iron levels fall enough for urge to move symptoms occur. There are some who have a good response to oral iron, but they are a small number. IV iron is what is needed for most. Remember, only about 50% of RLS patients respond to IV iron. If they do respond, the response is usually very good.

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://www.sciencedirect.com/science/a ... via%3Dihub
Blessings,
Holland

Rustsmith
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Re: Oral Iron instead of meds?

Post by Rustsmith »

Bill, most clinical trials for RLS that do not involve evaluating a medication will ask the test subjects to stop taking their normal meds before the test starts (if they are on them). The reason is that the researchers want to evaluate the effects of their treatment without any variations that might be introduced by the individual's "normal" meds. Although this is fairly standard practice when conducting research, it does cause some confusion such as your question about taking iron at the same time as continuing your normal meds. It also prevents those of us with severe to very severe RLS from participating in the research because we cannot function without our meds and getting off of them can also be very difficult even without the thought of living with untreated RLS. I feel that this skews the results of some tests (by excluding the severe end of the RLS population) and asked a prominent RLS researcher why more studies are not done that can include us. He thought for a moment and only said that yes, more studies need to be done on those of us with "complex" RLS.
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.

meiatflask
Posts: 22
Joined: Sat Aug 10, 2019 10:29 pm

Re: Oral Iron instead of meds?

Post by meiatflask »

Thanks.

Stjohnh- I had read the article that you linked to. (What surprises me is how little data there really is). Based upon your opening sentence, reduction of meds because of iron success is a goal. Although disappointing that the success rate of iron is not very high. This seems counterintuitive if BID is indeed at the root.

Rustsmith- yes, as an engineer, I understand that you must eliminate/control variables (like being off other meds) to draw real conclusions for any scientific research. So that makes sense. It does lead to the follow on comment - (which you address in your closing sentences) that the testing has limited participation and thus conclusions may have limited applicability. It also explains why (in the article linked by stjohnh) so many participants seem to drop out of the studies as they continue for longer periods of time.

As always,it would be great to have better data, information, conclusions on anything related to RLS. Seems like in everything I read, there are more exceptions than there are rules....

stjohnh
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Location: Palo Alto, California

Re: Oral Iron instead of meds?

Post by stjohnh »

meiatflask wrote: Although disappointing that the success rate of iron is not very high. This seems counterintuitive if BID is indeed at the root.
The reason for the less than 100% response to IV Iron is unknown. The most evidence points to the problem causing low brain iron is inadequate iron transport across the blood brain barrier. This is almost certainly caused by genetic (and likely epigenetic) factors. About 20 genes have been identified that are correlated with RLS. The exact function of most is just unknown. With 20 genes affecting the likelihood of having RLS, it is very understandable that some people have mild, some severe, and some atypical responses.
Blessings,
Holland

Oozz
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Joined: Wed Oct 11, 2017 8:09 pm

Re: Oral Iron instead of meds?

Post by Oozz »

In one of the more recent webinars, they stated that the efficacy of IV iron is directly related to hemoglobin levels. They theorized it has something to do with limited capacity for delivering both oxygen and high levels iron to the brain.

badnights
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Re: Oral Iron instead of meds?

Post by badnights »

meiatflask wrote:
Although disappointing that the success rate of iron is not very high. This seems counterintuitive if BID is indeed at the root.
The reason for the less than 100% response to IV Iron is unknown. The most evidence points to the problem causing low brain iron is inadequate iron transport across the blood brain barrier. This is almost certainly caused by genetic (and likely epigenetic) factors. About 20 genes have been identified that are correlated with RLS. The exact function of most is just unknown. With 20 genes affecting the likelihood of having RLS, it is very understandable that some people have mild, some severe, and some atypical responses.
Another way of responding to your comment, meiatflask: it is not counterintuitive when you consider that iron infusions go into the blood, yet the deficiency is in the brain. Different tissues in the body store different amounts of iron, and the iron has to be moved around by molecules that may or may not be produced without error in the right place at the right time. The brain is the most protected organ in the body; it is protected even from our own blood, by the cells that forms the walls of capillaries and associated cells (aka the blood-brain barrier). It is now thought by many that one of the main issues in WED/RLS - perhaps the main issue - is a dysfunction of the transport mechanism that moves iron across the blood-brain barrier, from the blood into the cerebrospinal fluid.

It is perhaps more puzzling that some iron infusions work, than that some don't. Imagine that your iron-transport mechanism is inefficient, but not completely defunct. In that case, with more iron in the blood, somehow more iron can make it across the bbb into the brain. However, if your iron-transport mechanism has failed in a major way, adding more iron to the blood doesn't help because there's no means of moving it across the bbb. Maybe something like that.

Holland explains that the iron-transport faults are probably partly genetic, but some of the faults might not appear until something happens to us, which is epigenetics (the genes don't get turned on unless something happens). On top of that, there are lots of WED/RLS-related genes, each one encoding a different protein, perhaps involved in the iron-transport process; maybe (I imagine it like this) maybe in one person, the molecules that move iron into the endothelial cell from the blood are malfunctioning, in someone else, the protein that moves iron across the cell to the other side is deformed and doesn't do its job properly; in yet another person, the signalling chemicals that reveal the concentration of iron in the brain are malformed, so the transporters don't carry enough iron across; and so on. In other words, there are many steps in the process where something could go wrong, so although the end result is the same - brain iron deficiency - the exact fault might not be the same in everyone.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
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