Restless Legs Syndrome (RLS) Discussion Board

MCH is Mean Corpuscular Hemoglobin. It is the amount of hemoglobin in the average cell. Doesn't mean much unless there are significant abnormalities in the other cell indexes. It can be normal with significant blood problems because it is an average. Most significant blood problems are associated with variations in the size of the blood cells, so the average hemoglobin in a cell has many possible interpretations, making its clinical use minimal.

I was able to to increase my ferritin level from 19 baseline to about 100 using OTC iron tablets, where it has stayed for over two years. It has significantly reduced my RLS. I take pramipexole 0.125 mg as needed and have not augmented despite about a decade on this med. Part of this is no doubt due to the fact that I don't take it daily. I feel pretty lucky that I have been able to reduce episodes of RLS and the frequency for pramipexole, and have not augmented in 10 years.

TimG wrote: ↑

Wed Mar 24, 2021 7:21 am

I was able to to increase my ferritin level from 19 baseline to about 100 using OTC iron tablets, where it has stayed for over two years. It has significantly reduced my RLS. I take pramipexole 0.125 mg as needed and have not augmented despite about a decade on this med. Part of this is no doubt due to the fact that I don't take it daily. I feel pretty lucky that I have been able to reduce episodes of RLS and the frequency for pramipexole, and have not augmented in 10 years.

Great Result!! When I was on pramipexole, I managed to reduce the dose to 1/2 of a 0125 mg tablet. Took it daily and had no problem, even though I had previously augmented on it. I took it with gabapentin and kratom.

For most people it is nearly impossible to get the ferritin over 100 with oral iron alone. The intestinal absorption of iron into the blood is limited by hepcidin, a hormone that blocks iron uptake from the gut to the blood. It is part of our natural defenses against too much iron. Most people that have a ferritin over 100 do not have "lots of iron" but have an elevated ferritin for other reasons.

Holland,

I'm not quite understanding you about higher Ferritin levels being due to something else. What else? I've read about a number of people with RLS who have, with oral iron, raised ferritin to close to 100, as I have.

How soon after you augmented on pramipexole did you start a reduced dose of pramipexole? What dose of pramipexole were you taking when you augmented?

I've looked into Kratom but it has too many unknowns for me to try it.

higher Ferritin levels being due to something else. What else?

Ferritin levels can be higher than "normal" due to any sort of inflammation in the body. This does not have to be something like an illness or an infected wound, it can be something such as arthritis or a mild, chronic sinus problem.

TimG wrote: ↑

Fri Mar 26, 2021 5:14 am

Holland,

I'm not quite understanding you about higher Ferritin levels being due to something else. What else? I've read about a number of people with RLS who have, with oral iron, raised ferritin to close to 100, as I have.

How soon after you augmented on pramipexole did you start a reduced dose of pramipexole? What dose of pramipexole were you taking when you augmented?

I've looked into Kratom but it has too many unknowns for me to try it.

The ferritin test is a terrible test for anything other than BLOOD iron, useless for BRAIN iron, which is what RLS patients need to know. There is no currently available test for brain iron. It is useful, but still poor for blood iron, because any form of acute or chronic inflammation will make the ferritin level go up a lot, even if the blood iron is very low.

I think I was taking 0.375 mg of pramipexole when I augmented. I don't remember how long after I realized I was augmenting that I stopped pramipexole. Probably a day or so.

Hi jacwillheal,

I also had my iron infusions ordered by a hemotologist, after referral by my neurologist. (Ferritin level was about 70, as I recall, maybe less. But as Holland says, blood ferritin level is a poor metric for brain iron. )

I followed Holland's advice, and PRINTED the Elsevier paper he linked to, so I could bring it physically with me & show both the neurologist AND the hemotologist. infusions were in late 2019.

Currently on .125 pramapexole + gabapentin (1200 per day)

Good luck!

Redshoes

PS:
redshoes here again.

My neurologist was agreeable to iron infusions bc I had augmented on ropinirole; Neupro patch gave me bad rashes; so the next route was methadone, which I understand is a procedural headache for the neurologist's office.

My neurologist was agreeable to iron infusions bc I had augmented on ropinirole; Neupro patch gave me bad rashes; so the next route was methadone, which I understand is a procedural headache for the neurologist's office.

Until my insurance approves infusions I am holding things at bay with hydrocodone and kratom. But the RLS is so very unpredictable. The doses I used to take of Hydro don't cover me for as long a period now and sometimes I have take 2 or 3 times my usual dose of Kratom because the teaspoon dose isn't kicking in. One thing I have discovered: Hot showers when Kratom isn't kicking in will quell the symptoms a lot. Sometimes I take two or three showers a night. lol...I have two sets of towels at the ready. But my symptoms are definitely worse over this time two years ago. I went off Zolpidem so I could get back on Hydro. Now each night I wake up every two hours and dose a teaspoon of kratom. Then wait 1/2 hour for it to kick in. If I am lucky I can go back to bed for another 2 to 2-1/2 hours and then repeat the process. The later in the morning the less strong are the symptoms. But all this waking up usually means spotty naps in the afternoon.