Ferritin

[Sharon21]

Hi I haven't posted on here for a long time, but do follow the posts when I can.

I have read a lot on here about Ferritin levels affecting the severity of rls, so thought I would ask my GP to check mine. I told her that as far as I was aware the level for people with rls should be 70 - 100. Anyway, my level has come back as 31, which my GP has apparently said is absolutely normal. Do people think I should chase this up with GP or maybe take an iron supplement myself. I am hoping to attend the conference in September, so maybe I could also ask this question there.

Also, does anyone know why the maximum dose of Ropinirole licensed for rls was reduced. I currently take 4mg at night and 1mg in early hours of morning, and am doing reasonably ok on this. I do get problems in the day at times, but have always had this so don't think it is augmentation. My GP hasn't mentioned reducing this because of the change in license, I guess because I was on in prior to the change. I just wondered what the reason is.

Thank you

Sharon

[ookla]

I have no facts to back this up whatsoever, but I assume any change to Rop max dose for RLS is due to someone somewhere finally waking up and realizing that dopamine agonists can make RLS worse and at some point, upping the dose is just chasing your tail... better to cut off the DAs sooner rather than later.

I wish doctors would stop prescribing DAs altogether and just stick to the RLS medications. Oh, wait... there aren't any. Oh well.

[nightdancer in reply to ookla]

Unfortunately, Parkinson's meds ARE RLS meds. They have been approved for RLS, so they are RLS meds, too. BUT, the dosing is MUCH different, MUCH higher for PD. Doctors, sometimes have not paid attention to the difference in RLS doses (much lower) and the difference in PD doses ( way to high for RLS) There are barely any meds out there for RLS only. It is other meds "also used for RLS". There really is no such thing as a med for RLS only, they have not made one except Horizant, and that was a miserable fail for the company and the patients.

[Kaarina Administrator]

Hi Sharon

Your ferritin level may be normal for a non RLS person but if you suffer from this condition it would appear yours is too low. On the RLS-Uk website there is a section For Professionals.

rls-uk.org/#!treatment-for-...

Perhaps you could point your doctor in the direction of this section and the site, where there is a video explaining about ferritin levels and RLS and that it should be higher than normal if diagnosed with this condition.

Sorry I cannot answer your question about Ropinirole as I have not been prescribed any meds for my RLS as it is intermittent and mild compared to others. I am sure someone will be able to help you though.

Kaarina

[Pippins2]

Hi Sharon,Kaarina has given you good advice about the iron.My GP didnt supplement me as my ferratin was 70 but I wanted it up to 100.I bought my own and in 6 months have got mine up to 108.Just remember to take iron with a glass of orange juice as you need the vitamin c to absorb iron.

The doses of the dopamine meds (in your case Requip) were lowered was because the higher the dose the higher the risk of augmentation. It is also more difficult to withdraw from the higher doses as well as the increase in the impulse control disorders. I am concerned you are taking such a high dose , the experts now say if the lower doses dont help it is not the med for you and its time to change meds.As you say you take 4mg of Requip at night and then need to take another 1mg early hours of morning then it is not working well for you.You will likely need a strong painkiller to help you come off such a high dose,Eventually you will find the 5mg is not enough and you cant keeping upping and upping.Please see your GP to discuss this ,good luck .,Pipps

[Windwalker]

Sharon,

I am a 78 yr old man with 40 yrs of suffering the symptoms of what is now called Willis-Ekbom or RLS depending on where you look. mine is an inherited condition. My mom and her 9 sisters had or one still living, if you can call her condition living.

I take 3 requips that are 2mg each and are time released pills. That is 6 mg in 24 hours and is the only way I can feel calm enough to function as a human being. I have RLS over my entire body without the repinirole I am one of those people who would deliberately over dose on some kind of opiate, which also gives me relief from symptoms but whose effectiveness demenishes over a short time. I have not heard that the dose has been reduced by the manufacteror or someone else with the authority to tell us sufferers what we should do, when trial and error is the only way we have arrived at the correct dosage for us, since everyone seems to be different.

The only thing I've seen we have in common is our misery when we go days without sleep.

[nightdancer in reply to Windwalker]

The RLS-UK has info on the dosing, windwalker, also the US RLS Foundation and also Dr. Buchfuhrer, and RLS specialist and the FDA in the US and also the International RLS Study Group. irlssg.org They are the authority on RLS internationally. 1-2 mgs Requip tops. But, do whatever you have to do, but the official therapeutic dose has been lowered and lowered the last few yrs. From 4 mgs to 3 mgs, to 2 mgs and now down to 1 mg. And it is people in authority putting out these guidelines for your own safety. There are also strong warnings on compulsive behavior plus heart damage, all in the last couple of years. fda.gov will give you the strongest warnings. just want people to get the right information. People with RLS and dopamine meds are still a work in progress, and it is the augmentation thing that is headlining this year.

[Sharon21]

Hi

Thank you for your helpful replies. I will try going back to GP with information and see if she will prescribe iron for me. If not I will try taking supplement myself- with a glass of orange juice as you suggest Pippins!

[cumoneileen]

Hi Sharon. I take 2 0,2mg ropinirole about 5pm and another 4 0.2mg at before I go to bed. 6 in all. My Doctor said I am within the safe guideline. I also take one co codamol

with my 4 ropinirole at bed time. I can never sit for long, I have to keep moving around. I can handle jumpy legs in day time, Its the nights are the worse although since Doctor upped night time tabs by 1, I have been sleeping better

[nightdancer in reply to cumoneileen]

cumoneileen, where are those decimal points supposed to be? Never have seen Requip dosed that way. unless you are talking about 2 mgs (no decimal point) IF you are taking 6 full mgs of Requip you are way over the recommended dose of 1-2 mgs that is the therapeutic dose. Doctors tend to mix up RLS doses with Parkinson's doses that do not keep up with the latest dosing information. So, just sayin.........check out the RLS-UK web site or rlshelp.org for proper dosing information that was updated last year.

[cumoneileen]

sorry about that nightdancer. should have read 0.25mg. 2 at about 5pm. and 4 before bed. I had normal ferretin reading.