Reduction in Ropinirole

[Pam34]

I've been reading everybody's comments on Magnesium, Iron, Diet etc and this is something I'm very interested in.

As I have said before by doctor won't support me in coming off the ropinirole (I have augmentation) and has suggested I wait until my appt comes through from the neurologist but I have no idea how long this may be and how much good it will be. I want to take control of it if I can.

I have read that I should reduce the ropinirole by 0.5mg every 3 days (I'm currently on 2mg a day). I expect it will be bad - has anybody experienced this and how did you manage?

I currently take magnesium malate but so far have noticed no difference (it has only been a week) and I wonder if the ropinirole might be a factor?

I would like to come off the ropinirole and then perhaps continue with the magnesium for a month before I introduce anything else or I will not be able to identify what is helping. I'm very interested in the comments on iron but how do you know which type and how much. And if your iron levels are normal is it harmful to take supplements? Last time I had a blood test for iron it was ok.

And in the meantime I'm going to try and adjust my diet. I already eat very healthily but could cut out the biscuits, chocolate and cakes that creep in now and again. Funnily enough I crave these when my legs are bad in the evening and my moral and willpower is very low.

Pam

[Hidden]

Pam, you do a test run with iron.  Two or three nights then talk to your doctor. Iron is not cyanide.  The only kind that seems to work for me and everyone else is a kind generically called iron bis-glycinate.  Brand name is Gentle Iron or maybe Ferrochel.  The bottle of Gentle Iron says to take one capsule which is 25 mg.  My kid's chewable vitamin has 18mg.  I'm not worried, plus about once a year I have my Ferritin checked, so I never even asked my doctor's permission.  I'm always in the normal range.

You cannot just take the iron at any old time of day.  You must take it during an attack or before bed.  Your stomach must be empty and you cannot take any other supplements or meds at the same time.  The Gentle Iron will cost you about $12 for a two month supply.

You will get complete relief and not need ropinirole.  Then like the rest of us you try to figure out what can be making your RLS worse than it has to be and you experiment with other substances like magnesium l threonate (thanks Frances) or vitamin D or calorie restriction or anything other than the iron. 

[Hidden]

Pam, you must also tell us every single other med and supplement you are on.  How is your weight and spine?  What other medical conditions do you have?  My RLS got worse with menopause as well.  It went from mild to moderate.  Even a diet pop will kick it into high gear or my inhaler.

[Pam34 in reply to Hidden]

My weight and spine are ok.

Currently I'm on 2mg of Ropinirole which I am aiming to come off as it is no longer working.

I take Calcium Citrate on morning to try and avoid osteoporosis (my last bone scan was fine) and a cod liver oil capsule. I have done this for years.

I take 425mg of Magnesium Malate on an evening and started this about a week ago. (no effect as yet)

I am lucky enough to have no other medical conditions but would class my RLS as moderate to severe. For instance last night it started at 4pm and I was unable to sit down until I took my first dose of Ropinorole at 9pm which kicked in when I went to bed at 10pm. I then take my second dose of Ropinirole at 1am when my first has worn off. Obvioulsy the effect of the Ropinirole has diminished over time and now only lasts about 3-4 hours. I do not want to increase the dose as the same will inevitably happen.

So I'm looking at other options.....

Pam

[Hidden]

Wow, you're in vigorously good health.  I'm very glad.  As you know the decision is up to you whether to try iron.  It takes guts to try something new, including the magnesium, not knowing if it is going to make an already unbearable situation worse.  Much luck!

[SLMCP]

I know it must be scary coming of drugs, but they are so potent.  I have just started a new regime of Mag Citrate, B6, B complex along with the osteopathy and acupuncture, but have not yet stopped the Rotigotine. I am going back for more treatment this Friday and will see what she says.  Will keep you posted...

[Arkangel]

Hello Pam, I know what you mean about the sweet things. I find that anything sweet makes the symptoms worse, but when I am feeling bad its comfort food I crave ie chocolate, ice cream etc. Not fair is it?

I take ropinirole  and have done for years now. I do find it helps, but my symptoms are now longer just at night, but pretty much all the time and it effects my arms too. I sleep very little at night and I do find that walking about helps, but that is obviously not ideal. I could just fancy an ice cream.........

[Pam34 in reply to Arkangel]

It sounds like you may be suffering from augmentation too - have you considered/tried anything other than ropinorole?

My symptoms were bad before I started the drug but once I developed a tolerance they have become a whole load worse. Starting earlier in the day and for longer periods. From what I have read ropinorole isn't a long term solution for most people.

I'm hoping when my referral comes through from the neurologist he will have some other ideas.

In the meantime I'm afraid I've just eaten a kitkat.......

[Arkangel in reply to Pam34]

just about to have a magnum! I have tried something else. It was a patch, afraid I can't remember the name. I'm not good with patches. They don't stay on, or if they do I get a skin reaction. It made me feel very anxious too, so it was back on the ropinirole.

I have had the symptoms as long as I can remember. When I was a child it was called growing pains!!!

My father had it very badly, and I remember the doctor telling him there was no such thing as restless legs. At least we are more enlightened now, even if there is no definitive cure.

Now for that magnum.