Here is a rather long and confusing article. Read it if you need to be lulled to sleep. journals.physiology.org/doi... In it I found a ridiculously interesting paragraph as follows: "Deficits in regional brain iron and changes in uptake and efflux of brain iron are currently being investigated as underlying causes of RLS symptoms. MRI, ultrasound imaging, and autopsy studies have all indicated that RLS patients exhibit low brain iron, particularly in the substantia nigra (1, 14, 24, 56). Furthermore, infusion of iron dextran improves RLS symptoms and elevates substantia nigra and prefrontal cortex iron levels (22). Later studies in which a different iron complex was infused did not result in an improvement in nigral iron concentration and did not improve RLS symptoms (23)."
Sooo, iron dextran (dextrose/glucose is a monosaccharide that unlike sucrose will cross the blood brain barrier) infused into RLS patients improved their brain iron levels and their symptoms of RLS, whereas another formulation did not. Wow!
It sounds like alot of RLS patients are getting this somewhat newer Injectafer infusion, yet like iron sucrose it uses a double sugar called maltose - I believe. Sucrose and maltose do not readily cross the blood brain barrier from what I read, but I could be confused. The absolute newest infusion uses Feraheme which sounds like the iron protein is in colloidial (small particle) form and uses glucose as a coating. BINGO...don't you think? The smaller the drug particle in size, weight and bonds the more readily it crosses the blood brain barrier.
Injectafer is the recommended formulation Dr. Buchfuhrer advises for RLS patients.However, several of us have obtained them and it hasn't made any difference.
It's the old conundrum. Why do 50% respond?
I'm like you- I believe there are several different causes of RLS - damage to nerves being the main cause of mine.
Time for RLSers to ask for iron dextran or that new feraheme when they go for an infusion. For all we know, the people in the past who got relief from their RLS symptoms (versus those who don't) might have gone to a hospital that uses iron dextran in their infusions. Oddly enough, I thought that the more broken done the iron formula is the more dangerous it might be, but then I read that iron sucrose is more problematic than iron dextran. I'm sure Injectafer is great for anemia and probably at a reasonable price (that's always a consideration when making these solutions), but I bet some of these other formulas would be better for RLS because it sounds to me like they have more of a chance of crossing the BBB.
This is the extract from The iron study on RLS.I hope there are scientific/medical members who can explain why the different formulas are more helpful for RLS. I know Dr B and Dr. Winkelman believe that Injectafer (Ferrinject) is the only formula worth having but who knows? As we all react differently to the meds, we probably also react differently to the types of iron.
'There are differences in the uptake of the different IV formulations by the macrophages [44], as well as different rates at which the iron is released from the carrier carbohydrate into the blood. Those with faster release (iron sucrose and iron gluconate) require administration at lower doses in order to avoid overwhelming available transferrin, and thereby producing excessive, and toxic, free or labile iron. The lower doses are repeated over several days to obtain the desired total dose. Conversely, compounds that release iron more slowly over many hours (low molecular weight iron dextran, ferric carboxymaltose, ferumoxytol, and iron isomaltoside) allow more iron to be taken up by transferrin, and produce less labile iron'.
Feraheme is what was ordered for me by Dr. Winkelman but due to the cost, my insurance said no way! Many years ago I had Infed, which is a low molecular weight iron dextran. I just finished my 3rd dose of Venofer which is iron sucrose. I get my ferritin redrawn in another week. We shall see what is traveling around in my blood at least.
At that time I was not being treated by a doctor with any level of expertise with RLS. I had relief for about 2 days. I have since learned that the dose I received back then was about 50% of what the total dose should have been. This time around, after I had finished 2 of 3 doses of Venofer, I went through about 4 nights of horrible RLS symptoms. Now Inhave finished my 3rd dose and am doing good so far. It is important to know that I am on Methadone for RLS too.
Yes, that’s exactly what I would expect. With iron dextran I would expect RLS patients to get that first night relief because, theoretically, it can be taken up by the brain from the bloodstream since the iron is bound up with a single molecule sugar. Simple sugars (glucose, dextrose) can cross the blood brain barrier. Iron sucrose is not a simple sugar and I would expect it to make RLS worse since it (and all infusions) raise hepcidin levels - albeit temporarily. More hepcidin means less of that free floating, bioavailable (via digestion) iron in our blood that our brains rely so heavily on since we really don’t have much in the way of brain iron stores. I’m amazed that everyone who gets iron sucrose or the ferric carboxylmaltose doesn’t have worsened RLS for a few days immediately following the infusion.
I definitely did not get first night relief. The only relief I got was about 3 weeks after my infusion and it only lasted for 2 days.
Now I am 4 days after my 3rd infusion of Venofer and have been symptom free. Of course, it’s almost midnight here in the US and I’m headed to bed. So, I hope it stays that way!
My hope is that I will be able to start to reduce my Methadone dosage. I really don’t know how realistic of a goal that is yet though.
Hidden 1 week after my 3rd dose of Venofer and RLS has woke me up 2 nights in a row. So disappointing. Think this will improve or continue to get worse? Where to go from here?
I would love to find a Dr who is willing to do an infusion for RLS. All the ones I have been to seem to not understand it or be willing to look at the studies I bring along. Maybe it would help if our disease had a better name. Restless Leg Syndrome is not sexy. Can we re-brand? 😅
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