Ferritin and requip

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
rthom
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Ferritin and requip

Postby rthom » Fri Aug 17, 2012 9:19 am

I need to find a link that talks about the reason the test is needed when taking the dopamine antagonists. The 16 pg info does not explain it. Anyone have one? It's really important.

Polar Bear
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Re: Ferritin and requip

Postby Polar Bear » Fri Aug 17, 2012 6:26 pm

I don't have a link, but will do a search and see what can be found regarding ferritin/requip.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

rthom
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Re: Ferritin and requip

Postby rthom » Fri Aug 17, 2012 7:23 pm

Thanks a bunch--I just have no time for about a week and my info got lost with the PC loss. Thanks again.

Polar Bear
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Re: Ferritin and requip

Postby Polar Bear » Fri Aug 17, 2012 8:05 pm

rthom - I hope you can find what you are looking for in these links.
Please forgive me if they are not exactly what you need, but perhaps there will be sufficient information regarding ferritin serum levels.

http://www.sciencesleep.org/ziliao/CSF% ... ndrome.pdf

http://www.ncbi.nlm.nih.gov/pubmed/15743333

http://www.ncbi.nlm.nih.gov/pubmed/19816198

http://www.veincenternorthtexas.com/rls-research.html
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Ferritin and requip

Postby ViewsAskew » Sat Aug 18, 2012 2:48 am

rthom wrote:I need to find a link that talks about the reason the test is needed when taking the dopamine antagonists. The 16 pg info does not explain it. Anyone have one? It's really important.


Do you need it for your doctor? If not, the short answer is that low serum ferritin levels are associated with high rates of augmentation when taking DAs (dopamine agonists). You want the ferritin as high as you can. Levels of 100 or more are preferable as this is associated with the lowest risk of augmentation.
Ann - Take what you need, leave the rest

Managing Your RLS

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.

rthom
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Joined: Sat Dec 31, 2011 3:03 am

Re: Ferritin and requip

Postby rthom » Sat Aug 18, 2012 11:39 am

No I was told by 2 folks that are associated with the RLSF that they had not heard that you need a test for ferritin because of the requip. So they would like me to find my supporting literature (and rightly so) but my pc had the hard drive fail so I don't have my research and any new research I try to do is very hard as the pc keeps cutting of the internet---so I have to keep re-looking it up. Very frustrating and mostly not do-able for me right now. (Have 6 dogs here and 3 are high management types). I just don't get any time for about 2 weeks realy. Thus the request from you guys. Any help is appreciated. If we are telling folks they need to have a check and a certain level we really need to be able to back it up is my opinion. I keep finding bits and pieces but no conclusive info. Just more suggestive stuff. Thanks again.

Polar Bear
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Re: Ferritin and requip

Postby Polar Bear » Sat Aug 18, 2012 1:12 pm

When I was searching google for ''ferritin rls''' it threw up some comments of Dr Bs from his Patient question and answer pages.
Would Dr Bs relevant responses be sufficient.

I went onto Dr Bs site - Southern California RLS Support Group
http://www.rlshelp.org/
If you scroll about half way down the page you will see the option to search.
I put in ''ferritin serum '' and got a lot of hits that took you to certain pages and letters. However it looks like when you get to each page that
perhaps you have to scroll down and look for it.

I hope you find what you are looking for.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

rthom
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Joined: Sat Dec 31, 2011 3:03 am

Re: Ferritin and requip

Postby rthom » Sat Aug 18, 2012 3:02 pm

thanks I'll take a loook asap :-) You are both very kind, and go above and beyond. (especially since it's all a volunteer thing you do!)

Polar Bear
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Re: Ferritin and requip

Postby Polar Bear » Sat Aug 18, 2012 4:46 pm

Thank you Randy :thumbup:
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Ferritin and requip

Postby ViewsAskew » Sat Aug 18, 2012 6:27 pm

As far as I know, there isn't a well known rule that you test for it, nor is there a requirement.

It's that research is showing that IF you have low ferritin, your chances for augmentation are MUCH greater. People with high ferritin levels have much lower rates of augmentation. So, the doctors looking at the research are suggesting that we make sure we get tested. Dr Picchietti was the first one to tell me this about 4 years ago. He told me verbally. Since then, Dr Buchfuhrer has also said that same. You don't have to get the test to get it, but you help yourself if you do.

Does that make sense?
Ann - Take what you need, leave the rest



Managing Your RLS



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.

badnights
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Re: Ferritin and requip

Postby badnights » Fri Oct 12, 2012 4:36 am

1. Sleep Medicine v. 10 (2009), p. 611, Frauscher et al. The severity range of restless legs syndrome (RLS) and augmentation in a prospective patient cohort: Association with ferritin levels.

Patients with augmentation had significantly lower ferritin levels than patients without augmentation (55.8 ± 43.6 microg/l vs. 105.8 ± 89.3 microg/l; p = 0.018).
...
Our data show an inverse correlation between ferritin levels and RLS severity ranging from ancillary diagnosis of RLS to augmented RLS. Patients with ancillary diagnosis of RLS had the highest ferritin levels, whereas patients with augmented RLS had the lowest. Midbrain iron deficiency has been demonstrated in autopsy, imaging and cerebrospinal fluid studies in idiopathic RLS [23–28]. In recent genome-wide association studies, a common variant in an intron of BTBD9 on chromosome 6p21.2 was identified to be associated with RLS [29,30]. A 13% decrease of serum ferritin was reported per allele of this at-risk variant [30]. Moreover, a recent study showed that RLS patients with lower ferritin at baseline were at a higher risk of developing augmentation during the course of dopaminergic treatment [18].
...
Almost one-third of the whole patient cohort had ferritin values <50 microg/l possibly indicating a need for iron substitution [33,5]. Moreover, 10% showed pathologically decreased ferritin levels <20 microg/l. The high frequency of low ferritin levels in RLS underlines the need for iron status evaluation in all patients with RLS as recommended by IRLSSG diagnostic guidelines (6) and is in line with the genetic link between iron regulation and RLS (30). In one early study, ferrous sulphate improved RLS in patients with ferritin levels <45 microg/l by 33%, whereas patients with ferritin levels >45 microg/l showed only a minor improvement of 10% compared to baseline RLS symptom severity [33].
...
Systematic data on iron substitution in augmented RLS are, so far, missing. Concerning the practical management of RLS, iron substitution should be considered before the initiation of RLS specific treatment in case of low ferritin levels below 45-50 microg/l [5,36] since a ferritin level <45 microg/l has been shown to detect 90% of patients with absent iron in bone marrow [37].
...
There was an inverse correlation between RLS severity and ferritin levels. Patients with current augmentation had the lowest ferritin levels. Our data further strengthen a putative role of low iron stores as a potential aggravator of idiopathic RLS.


2. My sleep doctor told me in 2010 that a recent article in Sleep Medicine had recommended 100-200 ng/L. I looked through the entire 2010 collection (I still had online access at the time) and couldn't find such an article, so maybe it was in a different journal.

3. There is also Dr B's recommendation, that pre-dates the above paper, from his book with Hening and Lee:
Hening, Buchfuhrer and Lee, 2008 (Clinical Management of Restless Legs Syndrome, p.199):
"RLS patients should have their serum ferritin level determined even when their hemoglobin and serum iron levels are normal. The serum ferritin level is the most accurate and sensitive test (other than a bone marrow evaluation) to determine whether iron stores are low. Serum ferritin levels <50 ug/mL (despite lab-reported normal levels of >10-20 ug/mL) have been associated with an increased severity of RLS, and treating these patients with supplemental iron may help their RLS."

Added March 2013:
4.
International RLS Study Group wrote:The patient’s serum ferritin level should be measured, and, if the concentration is lower than 75 µg/mL, supplementation with orally administered iron is recommended unless poorly tolerated or contraindicated.
Download the full report here:

5.
Neurotherapeutics (2012) 9:776–790 -Buchfuhrer wrote:In 1994, O’Keeffe et al. [21] reported the benefit of oral iron therapy in an open-label study that was inversely correlated with the serum ferritin level. Patients with ferritin levels <18 mcg/l improved the most, those with levels between 18 mcg/l and 45 mcg/l had an intermediate response, whereas those with levels >45 mcg/l derived little benefit from oral iron therapy. Therefore, oral iron therapy has been recommended for RLS patients with serum levels <45 mcg/l until the more recent double-blind, placebo controlled study by Wang et al. [79] in 2009 demonstrated an improvement of RLS symptoms by oral iron therapy of 325 mg bid for 3 months in patients with a range of ferritin levels between 15 and 75 mcg/l. Furthermore, a recent study [80] performed on Japanese children ages 2 to 14 years, with serum ferritin levels between 9 to 62 mcg/l, showed significant relief in the majority of subjects with oral iron therapy, which generally became noticeable after approximately 3 months of therapy.
Abstract is here: viewtopic.php?f=2&t=1068&p=65657&hilit=abstract+buchfuhrer#p65657
Edited Apr 19 2013 to add link to post containing abstract
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

pamndorr
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Re: Ferritin and requip

Postby pamndorr » Sat Dec 15, 2012 2:17 pm

I know this is an older post but this is what I have experienced with low ferritin. First of all I was going into augmention and rebound at the same time....I was on Requip at 14mg a day and it didn't help. I was scheduled for surgery in June on a bone spur and ganglian cyste from the top of my foot...and by chance my primary sent me to a sleep doctor that acturally seemed to understand things. He cancelled my surgery...said I had to get off all the requip and get my legs settled down. So I had my second drug holiday....all I can say is methadone sucks...but it took the pain away and held it off for the 8 weeks I was on it. Then we started on Mirapex. I had surgery things went fine. I had my ferritin tested 10/10 and it was at 32...tested again 11/10 and it was 38.
Dr. explained to me that for RLS we need our ferritn over 100 to get relief and hold off more augmentation. The insurance company refused because for a normal person without RLS that is an ok range. It took my doctor to get on the phone to the insuarnce company doctors to explain why I needed to have infusions to get my ferritn up over 100. After that they agreed and I had the Iron infusions...or in my case Venifer infusions in Feb 2011. I am speaking from my own personal experience here but I felt better after I was done with the infusions. My bones had been hurting so bad before and it wasnt just a funky feeling in my legs/ankles before the infusions it was in my arms and back too. After the infusions I felt better for awhile. My ferritin level was at 189 in March of 2011.
Then that doctor got sick and had to retire. I am still on Mirapex at 2.5 mg a day now. I feel the RLS everyday/night all the time. It is in my arms and back again. My ferritin level was at 80 when tested Oct. 2012. The doctors now say that is an ok level. I dont think so...seeing how I felt better when the ferritn was over 100.
I had knee replacement Nov 16 this year...it has done nothing to help with the rls feelings that are coming back. I take vicoden, oxycodone and valium to control the pain from surgery....and it doesnt do much for the rls at all.
So my take on the ferritin levels are over 100 worked to give me some relief...
Hope that helps....the problems seem to be finding a doctor that understands this disease.
Hope this helps...
Pam

Polar Bear
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Re: Ferritin and requip

Postby Polar Bear » Sun Dec 16, 2012 12:19 am

The meds that you are taking for your pain relief, one would think should go some way towards relieving RLS/WED symptoms. What a horrible disease this is.
The reasons for upping your ferritin still exist and its clear that the higher level benefits you.
Perhaps if your levels were way down really low the docs would reconsider - but on the one hand although it is good that they are at 80 (same as me) - on the other hand your ferritin may be dropping all the time and a boost now could see you sorted for a while.
Why can our doctors not read previous notes and understand the reasoning behind treatments that have been successful - give credit to a previous doctor who was able to help.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

rthom
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Re: Ferritin and requip

Postby rthom » Sun Dec 16, 2012 12:59 am

Have you tried talking to your dr about using something like clonidine to help you with your withdrawl?

badnights
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Re: Ferritin and requip

Postby badnights » Sun Dec 16, 2012 5:45 am

Pam wrote:I am still on Mirapex at 2.5 mg a day now. I feel the RLS everyday/night all the time. It is in my arms and back again. My ferritin level was at 80 when tested Oct. 2012. The doctors now say that is an ok level. I dont think so...seeing how I felt better when the ferritn was over 100.
I had knee replacement Nov 16 this year...it has done nothing to help with the rls feelings that are coming back. I take vicoden, oxycodone and valium to control the pain from surgery....and it doesnt do much for the rls at all.

Have you tried taking oral supplements? I take 2 pills of 300 mg ferrous sulfate nightly, with 500 mg (or is it 250?) vitamin C (to aid absorption). I was OK taking it on an empty stomach for a while (it absorbs best ) but now sometimes need food because I feel nauseous. I take them because my ferritin slips downwards if I don't. So maybe that will help you at least keep it from dropping further.

Ferrous gluconate is pretty mild and not easily absorbed. Ferrous sulfate is better absorbed but has more potential to hurt, Ferrous fumarate is the best absorbed but can be very harsh and I think is only used for severe iron anemia..? I should look it up before I post,,,, but tired. Then there are the "bioavailable" irons, which I don't know much about, but I think those might be the best options? Anyone use them?

How much of the various opioids were/are you taking at once? It's odd that they didn't provide relief, unless you were taking very low doses. Also not surprising if you are augmenting on the Mirapex, do you think you might be?
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.


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