Can’t find medicine that works

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
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Lmhaake
Posts: 6
Joined: Sat Jul 11, 2020 10:27 am

Can’t find medicine that works

Post by Lmhaake »

I’m at my wits end. I’ve tried Ropinirole, gabapentin, Neupro, OxyContin, an several others that I can’t remember. I either have problems with augmentation, medicine not working through the night, or side effects I can’t handle. The OxyContin worked well, but I had severe sweats and itching all over. Gabapentin did nothing. Ropinirole works for awhile and then severe augmentation. Im currently on Neupro, but even when I double up patches (I know I shouldn’t do that), I wake up around two with RLS. Any suggestions? My neurologist doesn’t seem to have any ideas.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Can’t find medicine that works

Post by Rustsmith »

Considering the meds that you have tried and the fact that double dose Neupro isn't through the night, it sounds like you need to be on an opioid for your RLS. The fact that you had side effects on OxyContin isn't unusual. The side effects that you experienced were definitely signs that you needed to switch to something else. During the recent Foundation Patient Seminar, several of the experts made the point that although opioids are pretty much interchangeable for pain, the same is not true of RLS. They all agreed that if one opioid doesn't work, then you need to keep trying until you find one that you can use. After all, that is the reason why there are so many. Most of the experts seem to prefer methadone for several reasons, including the fact that it is chemically different from the other opioids.

As for your neurologist, the fact that (s)he doesn't have any ideas is an indication that you either need to educate your doctor or you need to find one who is familiar with treating augmentation and refractory RLS. If you think that your doctor would be willing to learn, then share a copy of the book "Clinical Management of Restless Legs Syndrome" by Lee, Buchfuhrer, Allen and Hening. It is available from Amazon for about $35. You can read through it and then mark appropriate pages for your doctor to review. There is also a paper
The Appropriate Use of Opioids for Refractory Restless Legs Syndrome
at https://www.mayoclinicproceedings.org/a ... X/fulltext.

If you don't think your doctor would be willing to learn (many are not), then call other neurologists in your area and ask to speak with a nurse. Ask the nurse if the doctor has experience treating augmentation. The answer will make it obvious if the doctor is a candidate. You can also call the nearest major medical school and ask for an appointment with a doctor who is familiar with treating refractory RLS. You might need to drive a ways to do that, but it is worthwhile if that is what you need to do.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Can’t find medicine that works

Post by stjohnh »

You are almost certainly augmenting on the Neupro. So whatever your decision, you should plan on getting off it and avoid the othe dopamine agonists (Requip, pramipexole, Mirapex). I agree with Steve, it sounds as though you will need an opioid to control your RLS. You haven't mentioned iron, and that could be a god-send for you.

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 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 tests doctors usually do (ferritin test) to check for low iron only check 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
Blessings,
Holland

Lmhaake
Posts: 6
Joined: Sat Jul 11, 2020 10:27 am

Re: Can’t find medicine that works

Post by Lmhaake »

Thank you Steve and Holland. Some excellent suggestions. I’m pretty much stuck with my neurologist because I live on the Big Island of Hawaii and specialists are not easy to find. I’m going to order the book and definitely suggest to my doctor that I try IV iron treatments and different opioids if that doesn’t work. Thank you again.

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