A silent sufferer!

[Indirani]

Hi all
My name is Indirani. I live in Hyderabad, India. I'm now visiting my son in Phoenix helping take care of my grandson who's turned all of 5 months today.
I'm thrilled to see this forum because back home in India hardly anyone seems to know or understand let alone sympathise with my terrible RLS!
I've had RLS for over a decade. It used to give me severe insomnia but was never diagnosed till 4 years ago. A sleep doctor finally recognised RLS for what it was and put me on Ropinirole 1 mg. Rls augmented in less than a year. We experimented with Ropinirole XT because RLS would set in by mid day. That didn't work too
A year back I switched to Pramipex, first on .25 and now on .5 mg. It helps at night. But I've started feeling the creeping, restless sensation by day too. RLS sets in by late morning and gives me a hard time all day.
Should I increase the dosage?
I'm wondering if I can have one more dose of Pramipex .5 mg around noon. Does anyone do that?
I also bought this capsule called 'Stop Restless Legs' online. Has anyone tried it? Would you recommend I take it in addition to Pramipex?
I'll be very grateful for some answers.
Thank you

[stjohnh]

Hi Indirani,
I am happy you found us and am sorry you are having trouble with your RLS.

It has been a few years since I have been in Hyderabad. I used to go on a yearly medical mission trip with some of my church members, providing free medical care to Dalits. I have many fond memories of India and its people.

I am assuming that Pramipex is an Indian brand of pramipexole (brand is Mirapex in USA). That said, I think you are augmenting on the Pramipex, and increasing the dose will only make things worse, though you might have a brief period of improvement. Stopping the Pramipex is the only treatment that helps. If possible using an opioid (codeine, hydrocodone, Norco, oxy, etc) during the withdrawal from the Pramipex will help.

I would not take the "Stop Restless Legs." Almost no one has found any over the counter med available in the US to help RLS.

The fact that you have augmented on a relatively low dose suggests you may be especially low on Iron. During my trips to India, I found that lots more people in India are iron defiecent than in the US, women especially so. RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:

https://reader.elsevier.com/reader/sd/p ... 83A240A179

[Indirani]

Thank you so much for your most helpful suggestions Dr Holland. I'll try and get an IV iron just as soon as I get back to India. Hope to hold up on the Mirapex in the interim. I'm a trifle wary of starting on opioids as I'm in charge of a 5 month old and don't want to start anything new. But I'll work on it when I get back. Thanks again

[badnights]

A sleep doctor finally recognised RLS for what it was and put me on Ropinirole 1 mg. Rls augmented in less than a year. We experimented with Ropinirole XT because RLS would set in by mid day. That didn't work too
A year back I switched to Pramipex, first on .25 and now on .5 mg. It helps at night. But I've started feeling the creeping, restless sensation by day too. RLS sets in by late morning and gives me a hard time all day.
Should I increase the dosage?
I'm wondering if I can have one more dose of Pramipex .5 mg around noon. Does anyone do that?
I also bought this capsule called 'Stop Restless Legs' online. Has anyone tried it? Would you recommend I take it in addition to Pramipex?

Hi and welcome! I hope you continue to check in once you're home. I lived in Bangalore (and at Kodaikanal) for a year and a half when I was 16. (That was 4 decades ago now).

If at all possible, do not increase the dosage. It will just make stopping it harder. Try taking oral iron meantime, maybe 2 pills of 325 mg ferrous sulfate (these have 60-65 mg elemental iron). You will not notice the effects for a few weeks, unfortunately, but they may help keep you going as you try to arrange iron infusions.

Try quartering the dose so you can take one quarter earlier, or even halving it. A quarter might not be effective, tho, and a half might leave you short for the night.

Read as much as you can about augmentation and iron, and read the paper about treating RLS with opioids, so you have some background when you give these papers to your doctors.

I cannot really advise you, none of us can, and most doctors, I think, would say to go ahead and take an extra dose - - that's because they don't know about augmentation. What you're experiencing now gets even worse, the more Mirapex you take. So my advice - for what it's worth, I'm not in your shoes - is to hold off if at all possible. If you were certain of having a doctor in India who would give you a potent opioid while you withdrew from the Mirapex, then maybe it would be reasonable to increase the dose by 0.125.

[Indirani]

Thank you Beth. The suggestion to start off on oral iron supplements is appealing. Opioids sound a bit scary! But I'll talk to the doctor about it when back.
I am so happy to have found you all. The site is a treasure house of information on RLS. Thank you for that.

[Yankiwi]

Good luck!
Opioids are usually not scary at all for RLS people. I have taken two 60mg tablets of codeine for years with no need to increase. I also take gabapentin and iron. My sleep is broken but when I wake up the RLS pain is not very strong as before. I read and/or watch something on my iPad for about an hour and a half then go back to bed. Since I'm retired I can sleep later than when I worked.
Trying to find complete amelioration of symptoms can lead to trouble. I'm happy to have lessened symptoms without increasing doses of my current medicine.

[badnights]

Yankiwi makes a good point. When we try to remove all our symptoms, they seem to get worse, just enough to make us need more meds; then if we again try to take enough meds to cover them, they get worse again. Whereas if we just tolerate some level of symptoms - mild evening symptoms maybe - the symptoms stay the same for a long time. This is more noticeable on the dopamine agonists (Mirapex etc.) but it seems to be true generally.

I hope the oral iron works for you. I wonder if you should try to get labs of serum ferritin, serum iron, TIBC, and saturation before you start the oral iron? So your doctor in India will know what your numbers were before you started the iron. If you do get the work done, it should be a morning draw after an overnight fast.