Hydrocodone

[SleepyCharlie]

My friend has taken hydrocodone in the past to control her RLS. Our doctor retired, and she cannot find a new one who will prescribe it to her now. Have the rules changed? She has been to three doctors who prescribed other medicaitons with terrible side effects. she has been suicidal over this. What can she do?

[Rustsmith]

Where are you located? Perhaps someone here knows a local doctor who would be willing to help.

The official rules have not changed in many states (but a few states have implemented new rules), but the recent guidance from the CDC about limiting long term abuse of opiods and other pressures on doctors is creating an environment where many simply will not prescribe them, especially for RLS (as opposed to cancer). At this point, all you can do is to keep looking. Call as many doctors as you can. Concentrate on neurologists who specialize in movement disorders. Also take a look at the list of Quality Care Centers listed by the RLS Foundation because these groups are familiar with the difficulties of treating severe RLS. For many of us, a Quality Center is not located nearby, so we travel to where there is one. Also check the list of suggested doctors both on this board and the ones maintained on some of the private Facebook groups to see if there is someone in your area.

Another suggestion would be that as you call the various doctors in your area, ask to speak with one of the nurses. If the nurse says that her doctor will not prescribe them, ask first if there is a doctor in the area who is familiar with treating "refractory RLS", which is the term for those of us who have been through augmentation, since this is the condition where the use opiates is needed.

Also, don't be afraid to call the RLS Foundation office and ask for guidance. They may not have an answer, but they might be able to point you to someone who would.

I hate to say it, but you just have to keep searching. I moved last year and found that no doctor in me new town would prescribe any type of opiate due to widespread local abuse of pain pills. This was placing great pressure on both the local doctors and the pharmacies. My search resulted in two different sources suggesting the medical school at the state university (one source was a nurse at a local neurolgist's office and the other was the staff at the RLS Foundation). It took required a four month wait and a referral from a local GP to get an appointment with a doctor 100 miles away, but it has been worth it. If that had not worked, I would have joined others who fly cross country to one of the nationally recognized specialists. Ironically, two months after starting with my new doctor, I ran into a neurologist whose practice is just 40 miles away. When I told him about my experience he laughed in that knowing sort of way and told me that if I ever felt the need to switch, that he would be happy to help me out and provide me with the prescriptions that he knew that I need.

Good luck and I hope that you find something quickly.

[ViewsAskew]

As Steve noted, it is not a friendly environment out there at all. Do private message one of us if you do not want to post publicly about your location.

[badnights]

I can't add much to the sad tale of how to find a doctor who can treat RLS/WED that doesn't respond to the front-line medications

There are some things your friend can do meantime, though. One is to get her blood levels of ferritin checked. Ferritin is a protein that stores iron in our tissues, and its level in the blood reflects its level in other tissues. People with WED/RLS need at least 75 ng/ml, and sometimes over 200. If she just asks for iron work, they may not include ferritin, so she should ask for it specifically, making sure her doctor knows that It is the only diagnostic test that has relevance for RLS/WED. Low ferritin has been linked to greater severity of symptoms, and to increased risk of augmentation on dopamine medications.

When your friend gets the results, she must ask for the number. Labs might say "normal" for anything over 20. That might be ok for people without WED/RLS, but it's not ok for us.

If her ferritin is lower than 100, she should try supplementing with oral iron, if her doctor sees no harm in it. Some people notice improvement in their symptoms just from taking iron - no other meds. Try one or two pills daily that have the equivalent of 65 mg elemental iron, taken with vitamin C (about 500 mg C), on an empty stomach unless that causes pain. The C helps absorption. So does the absence of other food, but if it hurts, better to eat something and absorb less iron, than to not take it and absorb nothing.

If any of the medications she tried were dopamine ones, I hope she is not still taking them without having had her ferritin checked.

Another simple thing to do is to add a vitamin D supplement. Iron and D are the only two substances that have been scientifically linked to WED/RLS (though the link with D has not been studied as much). Again, be sure the doctor sees no harm. Taking up to 4000 IU daily of D is typically OK'd by doctors these days.

Information is your friend's best weapon at this point. She needs to know she's not crazy, that there are ways to treat this, that most doctors dont; know much about it but that many are willing to learn. The Foundation has some brochures that are freely downloadable on their Publications page at http://willis-ekbom.org/about-rls/publications, and others that you can download if you're a member (which is pretty cheap) - the most informative one is made for healthcare providers, RLS Medical Bulletin (near the bottom of the page). This could even be given to her doctor.

She should become familiar with the three classes of medication used to treat WED/RLS - dopamine agents, anti-convulsants (specifically, the alpha-2-delta ligands), and opioids. The dopamine agents include ropinirole/Requip, pramipexole/Mirapex, rotigotine/Neupro (a patch), and levo-carbidopa/Sinemet (I am giving common North American brand names after the slash). The biggest dangers with these meds are augmentation (the meds themselves making the disease worse) and compulsive behaviors.

The alpha-2-deltas used most in RLS/WED are gabapentin/Neurontin, pregabalin/Lyrica, and gabapentin encabil /Horizant. The biggest danger with these meds is, in some people, suicidal depression. If she is on one of these right now, she should contact her doctor and taper off it.

The opioids include a whole slew of medications, from low potency ones like codeine, through medium potency ones like hydrocodone, to high potency ones like methadone and hydromorphone. These are usually effective, but different people suffer different side effects. The biggest problem is the one you are learning about - the refusal of physicians to prescribe because of their ignorance of the fact that opioids are medically indicated for refractory RLS/WED (RLS/WED that doesn't respond to the front-line medications), and their fear that they could be sued.

The biggest two things your friend needs is to arm herself with information (so she can tell a doctor who's treating her well from one who isn't; so she knows when to stand her ground), and to find a doctor experienced in treating refractory RLS/WED - or even just a doctor willing to learn! You can help her with both, if you're willing.

[Polar Bear]

Another source of information is this book - Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. (Second Edition) These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon, it is not difficult to read or understand and is brilliant to refer to and as a basis for patient/doctor treatment guidance.