Restless Legs Syndrome (RLS) Discussion Board

Oozz - what did they say about hemoglobin levels? My hemoglobin has always been fine to abundant (until recently). My ferritin was single digits at one point, though. They showed a graph in the most recent iron webinar showing that IV iron worked better with patients who had higher hemoglobin level...

Here is the link:

https://pubmed.ncbi.nlm.nih.gov/26780276/

I’m reviving this on the basis that, in one of the most recent webinars, they said IV iron efficacy was directly related to hemoglobin levels. It was so strong it was predictive of how the patient would react to the therapy. This ties in nicely the thalassemia theory discussed here. I don’t think th...

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.

Searching through the forums I found a study done on the very subject of Hepcidin. Seems like they found low Hepcidin in CSF, and higher Hepcidin in the brain. This could suggest that the Hepcidin in the brain could potentially be reducing iron uptake in the brain.

Hi Fruno - do you have early-onset (< 36 years) or late-onset RLS? Funny that you would ask this :) Is this a magic number? I wasn't aware of it. I observed the first symptoms shortly after turning 35. In retrospect, I suspect that starting PPIs could have contributed, at least there is a clear tim...

We couldn't afford the Injectafer either and went with the LMW iron, which worked wonders. It was about $415 out of pocket for the infusion and the nursing care to give it. We got another type 1.5 years prior to this, and it did nothing. I think Injectafer and LMW are the only twp to try. I had to ...

I'm about 6 weeks post-infusion. I am maintaining at 6mg hydromorph contin instead of 9 mg. I have energy during the day, and find I can work normal amount of hours again. I've gone from working 5 or 6 hours (some days, less), some of those spent drooling in hiatus or lying under my desk, to workin...

Holland -

Do you have early-onset (< 36 years) or late onSet RLS?

Food with FODMAPs (to avoid) include legumes, garlic, onions, lots of other veg, many fruits, and a lot of gluten-free grains, also some foods that are considered prebiotics (food for the good gut bugs). I wanted to try it but I gave up the idea cuz I was (still am) doing the Wahls diet, and I didn...

Wanted to update this. I came off all drugs for two weeks, then restarted on mirapex + lyrica. My gastroparesis seems to have gone away. Although I’ve been on a liquid diet for two weeks, I would conclude that it was the methadone causing my GI motility problems. I will now be rotating meds with the...

Hello - I’ve been researching a lot lately and was wondering why Hepcidin is not a biomarker used in RLS to evaluate functional issues with iron transportation. If you believe in the inflammation theory, it seems like a very logical marker as increased inflammation would increase Hepcidin and reduce...

I would simply try other opioids (Morphine, Oxycodone or Hydromorphone) and see if the situation improves or not. Methadone is known to have many problematic side effects. There are many people who do not tolerate methadone for various reasons. If available, you can also look into medical Marijuana...

What hoops did you have to go through or others in order to get the hematologist comfortable enough to do it? I printed the study from the RLS study group, highlighted the relevant section and went to my neurologist. He said that he can't do it, but sent me to a GP whom he knew who does iron infusi...

It seems like methadone is causing me to have gastroparesis. It has completely turned my life upside down. I’m not 100% it is the methadone , but that is what the GI doctor believes. It’s just so odd because I’ve been taking methadone 5mg for about 8 mos with good success and out of nowhere starting...