Medication doesn't work

[2BassetMom]

I am so glad I found this forum! Out of desperation Sunday night as I was dealing with RLS I starting looking online for any information I could find. I have been dealing with mild rls for several years and would just get up, walk around, and play solitaire on the computer until the legs settled down. I found that I was having too many night like that and the severity of the incidents was causing me to lose a lot of sleep. I went to my doctor in early March and he prescribed Pramipexole 0.125MG one daily @ bedtime. That worked really well for about a week and slowly the rls came back inspite of the medication. I just stopped that med on Sat. I didn't want to take another med because I am on several different meds for a bulging disk, laryngeospasms and other health issues. I see the doctor tomorrow to see what he suggests. I have read about lifestyle changes and am considering implementing some of them. I would appreciate any information on what is helping others. I will have a look around the forum and see if I can find help also. One last note, I find it necesssary to take a nap in the afternoon to function in the evening due to a health issue and rls makes that impossible.

[2BassetMom]

Sorry about that topic title, Should be Medication doesn't work. Must be the lack of sleep

[Rustsmith]

No problem with the topic title 2BassetMom, we have ALL been there. Anyway, I fixed it for you.

Your best place to look for information at you point is the Good Place to Start topic at the top of Just Joined. You might also use the Search function in the upper left of this page to look for "coping" methods. You have already found one of them, computer solitaire and other online games that engage the mind. Hot showers or baths are another common method that seems to work for many.

You should also ask you doctor to have your ferritin level checked, because low iron levels can make things worse. When you doctor gets the results, ask for a number because normal levels are anything over 20, but for WED patients it should be at least 50 and should over 100 if you are taking any of the dopamine agonist meds. Of course, the rest of the checks of iron levels should also be acceptable.

You should also take a look at the other medications that you are taking and verify that none of them is causing any problems. Given the health issues you mentioned, you might even find that you are getting some benefit from one or two - or that a minor change could do dual purpose.

As for the benefits of pramipexole disappearing after a week, have a read through some of the information about augmentation. It appears that you may be one of the unlucky few who augments on dopamine agonists very quickly. If so, that will reduce your treatment options in the future.

[badnights]

I will re-iterate what Steve said about augmentation, because it's very important that you know what it is and that raising your dose of pramipexole will likely make it worse. Augmentation is a paradoxical response to a medication: what used to help now exacerbates the disease. Doctors aren't familiar with it, since it's almost unique to WED/RLS, so they tend to up your dose when augmentation sets in, in ignorance of the danger. It happens with the dopamine agonist meds, which include pramipexole and ropinirole. It is so grave a problem that some specialists have suggested that DAs no longer be regarded as first-choice treatments for WED/RLS.

There are links under my name, below, that might help.

[ViewsAskew]

Great responses so far.

I've little to add....if it were me, here's what I'd do. Read the link in my signature. It's a good starting place with the things that may help, from the importance of ferritin levels to the dangers of augmentation.

You've already stopped the med - GOOD FOR YOU! But, now you have to figure out what do do next. The link in my signature may give you a few ideas.

The truth is that there really aren't many non-drug things that help all of us. Sure, some people stop eating sugar and all the sudden they are fine...but most of us? It just doesn't happen. It may be worth looking into, however. From diet to sleep hygiene to regular exercise, all of them may help. If you have another disease/condition - pregnancy, diabetes, MS, celiac disease, and many others - RLS/WED often occurs as secondary to them. When you resolve the primary issue, the WED gets better.

Definitely get your serum ferritin tested. There is a lot of evidence that people with serum ferritin under 100 are much more likely to experience augmentation. And, you appear to have. I also augmented within a week. My ferritin was 8. While 15 to 20 is usually what the labs say is the minimum, for people with WED/RLS, 50 is the minimum and closer to 100 is the minimum suggested to use the dopamine agonists.

If you decide that you think drugs may be necessary, you can try the traditional prescription route - if you do, consider getting "Clinical Management of Restless Legs Syndrome" by Lee, Buchfuhrer, and Allen (second edition). It's almost indispensable when learning about the medications. Alternately, consider some non-prescription drugs or medical marijuana (depending on where you live). Non prescription kratom helps some of our members and keeps them from needing prescription drugs and appears to have few side effects. It is illegal in a few US states - unsure of other countries. It is NOT regulated, which remains my biggest concern to it. Medical marijuana helps some, too, and is regulated in the US states that offer it.