I am experiencing a severe episode of RLS since March.it was so bad that my motor symptoms deteriorated, and more.
The Parkinson specialist offered me iv iron as my ferritin levelis 7,5 so raising it could prevent it.
I am anxious because of this research showing iron in post-mortem brain slices of pwpd.I tried to eat more iron-rich foods but frankly,I didn't manage.
I wondered if anybody had had RLS and could share his experience.
Thanks
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enjoy2013
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Cannot directly address your issue but I can send you what I have stored in my library. Hopefully you will better understand the role iron plays in RLS.
Thank you CaseyInsight! Amazing this review of yours, it is right on the spot! Both my mum and brother have RLS (and no PD). My ferritin is 75 so there is room for improvement and my B12 levels are also on the lower edge. I really wonder if the genes and alterations in iron metabolism have lead to my PD. I'll need to make some further reading
Yes, that is interesting, and useful. Actually, both my brother and me have observed an association between eating glucose-rich foods and RLS on the same day, even during day time! Thank you
I am so sorry that you are suffering from restless leg! I experienced it myself this past winter after an increase in my Sinemet dosing. Fortunately, my movement disorder specialist for Parkinson’s also specializes in restless leg, so she recognized it right away.
She recommended this Mayo Clin Proc 2021 paper and follows the algorithm in her practice:
I found it to be very helpful in understanding the different treatment options and the risks of augmentation. I provided a copy of it to the hematologist to whom I was referred for ferritin level assessment and monitoring and he found it to be beneficial, as well.
Many healthcare providers are not very knowledgeable about restless leg and its triggers. There has been a huge shift in management over the past five years or so, as some of the medications used to treat restless leg can actually exacerbate it. The link between restless leg and low ferritin levels and the methods of raising levels also may not be widely known.
There also is not much info available on restless leg in the Parkinson’s population. Because most of us are on or will be on some type of dopamine therapy, I think it is important to have restless leg on our radars to discuss with our neurologists if there are concerns, particularly if taking a dopamine agonist.
I currently am taking 300mg Horizant every night for the restless leg and am working on increasing my ferritin levels through oral supplementation. My levels are slowIy, but steadily, increasing. Because I almost have full symptom relief right now, the hematologist and I are not considering IV therapy at this time. I am hoping to eliminate Horizant in the future once my ferritin levels are optimized.
The other resource that I highly recommend is the Restless Leg Syndrome forum organized by EARLS, also on healthunlocked.com. This group provides invaluable insight, tips, recommendations, especially on restless leg syndrome triggers (long list of meds that can contribute, also alcohol, and certain foods for some people), augmentation, weaning of certain meds, and increasing ferritin levels.
Just as is the case with this Parkinson’s forum, there are regular posters who are so knowledgeable and helpful. If you have additional questions, I recommend joining that forum, review and search previous posts, and then request any other advice from them, if needed. I am such a “newbie” that I would defer any questions to them!
Thank you again, your information is very useful. Indeed, my ferritin (and B12 too), are both on the lower edge of normal. I started supplementation for both.I'll join the RLS forum.
I don't know what I would do without the forum support.
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