Restless Legs Syndrome (RLS) Discussion Board

I've been taking .25 mg of ropinirole for 2 years. I was taking it with 2.5 mg of hydrocodone which seemed to work well at keeping my RLS controlled, but I was still waking at 2 or 3 am - - - so I would take ambien or xanax to get back to sleep. Like so many others, I HATE taking any medications at all. Because of all the hype about opioid addiction, I stopped taking the hydrocodone and tried to stop taking any of the other prescription meds except ropinirole. This was not a good move. I have break through RLS, relentless insomnia with or without RLS. Reluctant to take any meds, I usually stay awake until 3-4 am, before giving up and taking either ambien, or xanax, or hydrocodone. I fear augmentation and feel I could be seeing the beginning of this problem. I fear addiction to other drugs and the regular use of these drugs. If I understand the recommendations for IV iron correctly, I may benefit from this treatment even if my ferritin is above 75? It was 82 two weeks ago. However, in November of 2018 it was 161. Is it normal to have such a wide discrepancy? I think I will go back to taking the 2.5 mg of hydrocodone with the .25 ropinirole and see if I can get a normal night.

Also, does the IV iron provide permanent cure?

Last question first - the benefits of iron IV's is not permanent. The time they are effective varies between individuals and I suspect some will provide their experience. You can expect many months of help, but not permanent. Also, there are no "cures" for RLS at this point.

As for addiction, the chances of addiction from opioids at the dose levels used to treat RLS is very low. Studies of chronic pain patients who were screened for addiction risk (prior or family history of gambling, alcohol, drug, etc) found that the risk was less than 1%. But the dose used to treat chronic pain is 10 to 20 times higher than what is used for RLS. A 5 yr study is being conducted at Massachusetts General Hospital to demonstrate this, but that study is only about half way done.

Unfortunately, the standard test for blood iron, the ferritin test, is a really poor test for several reasons. One of which you have noted. The result of a ferritin test will go up if a person has more iron in their blood (which does not correlate well with brain iron). The normal ferritin level varies depending on time of day, diet, and recent iron treatment, in addition to inflammation of ANY type, that a patient may not even realize. You will get more accurate ferritin results if: No infections at all (even a cold) for at least a month, have the test done fasting (water only for at least 8 hours), and having the test done first thing in the morning. No iron tablets for at least 48 hours before the test.

IV iron is unfortunately not a cure all. It is currently the most close to a good treatment there is. That is, current standard classic treatments ALL have serious side effects that almost everyone that uses them get. DAs (ropinirole, pramipexole, Neupro) all cause augmentation, fatigue, occasional nausea, and compulsive behaviors (some that can ruin lives). Alpha 2 delta ligands (gabapentin, Horizant, Lyrica) all cause next day drowsiness, depression, weight gain and fatigue. Opioids cause tolerance, hyperalertness, fatigue, constipation and carry a strong social stigma that is hard to escape.

IV Iron doesn't cause any of those and is almost side effect free. HOWEVER... It is currently difficult to get doctors to prescribe it, it only helps about 1/2 of RLS patients and only 25-30% of RLS patients getting their first IV iron get complete or nearly complete resolution of symptoms. It is frequently expensive if insurance will not pay.

Back to the question of how long IV Iron lasts... For the initial set of infusions (if a patient is going to respond) improvement takes at least a month before becoming apparent. Relief lasts a couple of months to a year. My initial set lasted 22 weeks. Subsequent sets of IV treatments last longer. I am on my second set. The data suggest 2nd and subsequent treatments last mostly 1-2 years.