Long-time sufferer -- thanks for the add -- I need help

[Janet in Spain]

Hi I was diagnosed with RLS about 30 years ago but suffered from it longer than that. I spent many nights pacing because I could not sit or lay down. I tried quinine, iron, magnesium, and all the other naturopathic treatment that were suggested. I finally sought a neurologist who put me on .25 mg of Requip. Over the years I've had to increase to 1 mg -- which I take in 2 doses (.5 at 6 pm and .5 at 11 pm when I go to bed). It has worked for me for many years but I have started having augmentation symptoms. I know I need to change medications and I hope others in this group can help. My situation is complicated.

I'm an American but moved to Spain in 2017. I took my Requip prescription to my local pharmacist and she had no problem filling it without a new prescription. (Pharmacists here are closer to what nurse practitioners are in the US.) Now I need to make a change. I could probably take a new drug name to her and she'd prescribe it, but I don't know about switching over. My local doctor is not familiar with RLS and there is some language barrier. I can have basic medical conversations with him but not something as complex as describing RLS symptoms and augmentation. My pharmacist Ana speaks English.

I asked in the local expat group on FB for a referral to a neurologist familiar with RLS, but so far the closest is a 4 hour drive (Madrid). One friend replied with this information about drugs that are available here: ropinirole (Requip), pramipexole (Mirapex), gabapentin enacarbil (Horizant) and rotigotine (Neupro). Neurontin is gabapentin but NOT the extended release that Horizant is (not yet in Spain).

Can someone recommend which of these would be best for me to consider as an alternative to Requip? I do take a low dose. I'm lucky, I guess, because even though my RLS is severe -- the low dose has always worked. Can I stop taking it and switch without a long transition process? I need to do this soon because of the augmentation, and even finding an RLS-aware neurologist who also speaks English and is in my region of Spain can be a long process. If I can do this with Ana (my pharmacist) I'd rather pursue that.

[Rustsmith]

Switching to pramipexole or the rotigatine patch will only delay the time until you once again augment since these are both dopamine agonists. Of the meds that you mentioned gabapentin and Horizant are the only ones that are not dopamine agonists. They work for about 65% of RLS patients as far as the movement issues, but both are very effective when it comes to helping with sleep.

Since you are augmenting on Requip, you can expect to go through an extended withdrawal period unless you can get access to some sort of opioid, such as tramadol or codeine. The withdrawal without an opioid will consist of about a week of zero sleep and horrible movement issues, peaking around day 4. If you need to go this route, I suggest you give any extra requip pills to a friend or family member to hide because you will be too enticed to take one to relieve the RLS and get some sleep. Around day 7, you will finally be able to start taking short naps with increasing amounts of sleep for the next month. You can take gabapentin or Horizant during this time, but they are not strong enough to cover the withdrawal symptoms and will only start helping after the first week. On the other hand, an opioid taken during that first week will completely cover the withdrawal and can then be tapered starting around day five or six.

[Janet in Spain]

Thank you for the response. Unfortunately I'm one of the micro-number of people who can't take any opioid because it will trigger a pancreatitis attack (learned the very hard way after major surgery), so I'm screwed on that front for help. I guess increasing my ropinerole dose and staying on it isn't an option. Damn, RLS sucks. And knowing my genetics and medication history, I doubt I'll fall into that 65% success category. Years ago after one incident my doctor turned to the nurse and said, "She's the one." When I asked what he meant, he said, when a medication says "Only one out of X people won't get relief/will have a bad reaction/etc. -- you're that one."

[Rustsmith]

Have your doctors done blood tests to determine your iron levels, especially ferritin? Many with RLS have low iron levels (not the same thing as anemia). It can take months of taking an oral iron supplement to get your ferritin to acceptable levels, which is why so many doctors are now starting to use iron infusions. If you do need iron (and given that an infusion is unlikely without travel to Madrid), you need to take a supplement that contains 65mg equivalents of iron (this is 325mg of ferrous sulfate). This should be taken between meals and with vitamin C to aid adsorption. You must also not take either calcium, magnesium, zinc or a thyroid med around the same time as these will block iron adsorption. Iron can also upset the stomach of some people, just as a word or warning if you have a sensitive stomach.

[Janet in Spain]

Thank you very much. I searched another "find a doctor" site here in Spain and found a neurologist in Valencia (just an hour away)that lists RLS as one of his specialities. I've sent a message asking for an appointment. I will print your response to take when I go. Not to hand him but as a reference for myself so I can remember what to ask.

[Polar Bear]

If you haven't already had your ferritin serum level checked it would be good idea to do so. It's generally not done in normal blood checks, you need to ask for it. A level of 20 may be considered normal but as an rls sufferer you will want it up around 70, even towards 100.

[Janet in Spain]

Thanks. I did recently have a "full blood workup" but the results did not list ferritin serum levels. I'll ask Dr. Tatay about it when I get an appointment.

[Rustsmith]

If he is familiar with RLS, he will want to do it without asking. Might be a good indicator of his familiarity if you have to prod to get it done.

[Janet in Spain]

His profile on Top Doctors (Spain) says he is. I've sent a message stating what I want to see him for and asking for an appointment. We shall see.