Weaning off of a low dose of Ropinirole

[pamelap]

Good morning! I currently take 0.125 mg of Ropinirole daily (about 2 hours before bed). I have mild augmentation symptoms and have experienced these since about one month into this treatment (I have taken it for around 6 months); however, I have avoided increasing the dose and generally find the augmentation symptoms to be manageable. Acupuncture has helped somewhat with this. However, I am now wondering, based on the recent Nightwalkers articles, whether I should just try to wean myself off of this now. I happen to have a month coming up where I can afford to remain at home and try to sleep during the day if needed during the withdrawal. I won't be able to see my prescribing physician for a few months, but my dose is relatively low and I thought that it might work for me to just try to wean off it myself so that I can be off of everything before my next appointment with the neurologist. I would appreciate any input regarding this idea. Thank you!

[stjohnh]

Could you elaborate on the symptoms of augmentation you are experiencing? The reason I ask is that 0.125mg ropinirole is a low dose, and it would be unusual to develop augmentation after only one month of use. Have you had your ferritin checked? If so what is the numerical result? Was it over 100?

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://www.sciencedirect.com/science/a ... via%3Dihub

[pamelap]

Thank you so much for taking the time to discuss this with me in such detail! I have had my Ferritin levels checked once, in August 2020. At that time, the Ferritin value was 27.4. The Iron Serum value was 86. The primary augmentation symptom I have experienced has been starting to have restless leg symptoms several hours earlier than had been the case and an hour or so ahead of when I normally take the medication. This started happening almost right away. It doesn't happen everyday - maybe 4 days a week or so - and usually doesn't last but 15 mins or so, if I get up and move around. But I have also noticed that I seem to have a little more breakthrough RLS activity during the night than I used to, and it sometimes starts earlier. I normally take the medication at around 8:30 pm. In the beginning, I would make it until around 3:00 am before starting to have RLS symptoms (was this related to the half-life of the med and when it was wearing off?). Lately, I sometimes start having RLS symptoms by 12:00 or 1:00 am, and they may continue intermittently during the night, but not nearly at the same level of severity as I experienced prior to starting medication. Am I correct in referring to these symptoms as augmentation? Thank you again for your input!

[stjohnh]

Hmm... Certainly some of your symptoms sound like augmentation, and augmentation does occur more quickly and at lower ropinirole doses if your iron levels are low. Ferritin of 27 is Very low for a person with RLS. Certainly should be above 100. Have you been taking oral iron? If you haven't, then the first thing I would do is start taking oral iron. Ferrous Sulfate is the most common form. Helps to take it on empty stomach with vitamin C.

[pamelap]

Thanks for the suggestion! I have not been taking oral iron. I used to get some in my multi-vitamin; however, I recently stopped the multi-vit because I had to start taking AREDS 2 vitamins for my retinal health, and the vitamins contained zinc, which interfered with the zinc/copper ration of the AREDS 2 vitamins. It's all so complicated! I am open to taking Ferrous Sulfate. What kind of dose do you suggest? Thanks!

[Rustsmith]

The recommended dose for ferrous sulfate is 365mg, which is also listed as 65mg equivalents of iron. It should be taken on an empty stomach and with a vitamin C tablet. It is also important that this should not be taken around the time that you are taking anything with zinc, copper, calcium or magnesium since all of these limit your ability to adsorb the iron (iron gets the lowest priority of these minerals).

Also, you need to be forewarned that ferrous sulfate can be hard on the stomach for some people. If that causes you a problem, you can find more gentle forms of iron as iron gluconate or iron bisglycinate. These don't need the vitamin C and are a bit more expensive. The dose for these will be something different from 365mg, but should still provide 65mg equivalents of iron.

[pamelap]

Thank you very much for the information. I will look into this further. This was very helpful. I have some ferrous gluconate in my pantry (27 mg tablets), which I have tolerated well when I have taken them. I will need to take something that is gentle on the stomach because I have a bile reflux disorder which easily leads to gastritis. I do have a challenge with the timing of supplements due to other medication and supplement needs. For instance, I take Sucralfate 3 times a day for a bile reflux disorder, on an empty stomach and also take AREDS 2 vitamins twice a day, also at a different time from calcium and the other minerals you mentioned. So the timing of anything else will be tricky, particularly on an empty stomach. But I will work on it. Thanks again!