Medicine Not Working

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I have had RLS for 50+ years.  I take 1mg of Ropinirole at night before bed.  It hasn't worked the best but lately hasn't worked at all.  I have started taking 2 pills (2mg) and it seems to work.  Has anyone has any experience with doing this and were there any side effects?  Sadly my GP is not versed on RLS and will prescribe anything I ask for.

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  • Posted

    I have the same issue. I went off the Ropinirole and started on Pramipexole which did work but had some weird side effects, like impulsive behavior issues. After 3-4 years, this drug began to become ineffective. Now I'm back on Ropinerole at 6mg, and I can take a 3mg when I have breakthroughs while at work. I also take 150mg of Trazadone with the 6mg of Ropinirole before bedtime. So far it works okay. Hope this helps. 

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    • Posted

      Trazadone is an antidepressant and is likely sedating your RLS much like opiates do. If the combination works for you with no major side effects then continue.
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  • Posted

    Hi Mary.    I went to neurolist and she said I should not have been  on ropinrole for more then 6 months and I have been obit for almost 3 years for it could make it worst instead of better.  I am having a hard time also for she wants me to go off for it  2 weeks and then try new one ,but I cannot for I am up all night walking the floor.  I am told I am lacking in magnesium so am doing that and I also going to acupuncture for it is helping a bit need more time, but I also have some pinch nerve in lower back and bulging disk he is helping me with.   I also know if I eat anything with sugar it is much worst.  I was also told to take vitamin e and some folic acid so not sure if any of this helps  but I was walk-ing floor all day now mostly night time only .   Good luck 
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    • Posted

      Ropinirole can exacerbate RLS at high levels and the body will adapt to it over time. Many neurologists will prescribe Mirapex as an alternative. I'm not aware of sugar as a trigger but it's possible.. RLS is a lack of dopamine re-uptake in the brain, a chemical imbalance if you will. Suggest you have your iron levels checked as low ferrite levels are associated with RLS. Be aware that drowsiness is one side effect of ropinirole you may or may not experience so be careful when taking it when driving.

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  • Posted

    There shouldn't be any noticeable side effects at 2mg ropinirole but like any drug for RLS the body will eventually adapt to it. You might have your iron levels checked, low ferrite levels are associated with RLS. You might also look into 2mg ropinirole extended release for longer time benefit. See if your GP can refer you to a neurologist, preferably one with knowledge of RLS or sleep medicine.

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  • Posted

    My dad did not do well on Ropinirol.  I won’t say what his side effect was because sometimes I feel with RLS when we get something in our heads we make it happen so I don’t want to do that to you! 

    What worked for him for 30 yrs and now me for the past two was/is Tramadol! The only reason my dad had to give it up and try other options was because he ended up on other meds due to cancer and it wouldn’t be safe to stay with the mixture! He took A LOT of Tramadol, 150mg all at once! Insurance would never allow for that so his dr would write the prescription for 50mg 3Xdaily and he would take them all at once at 6pm. Worked like a charm for 30 yrs!! Don’t know how he functioned in that but he did! I’d be comatose I think!

    I myself take 50mg at 6:45pm and it’s been perfect! Trick is to take it BEFORE the symptoms arise!! Mine hit me when it’s time to sit down and relax watching tv for the night so I know I need to take it about 40-50 min before I plan to do that! If I forget and I’m late, I stay on my feet and keep busy for another hour! 

    Hope you can find relief soon!! It’s such a nightmare that anyone who doesn’t have it can’t even  begin to understand!!

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  • Posted

    Thank you everyone for your prompt and insightful responses to my blog.  I think, for now, that I will stick with the 2mg of ropinirole.  It is a low dose and so far I have had no ill effects.  If it does begin to lose it's effectiveness, I will then make an appointment with a neurologist.  I feel that would be my best route as most GP's are not familiar with RLS.  You have all given me food for thought.  Thank You

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  • Posted

    Hi,

    Dopamine Agonists (Ropinorole, Rotigotine, Pramipexole) are no longer the recommended drugs for RLS as once you reach tolerance (no longer effective) you should not increase the dose due to risk of Augmention. This is a spiralling increase in RLS with symptoms moving to other parts of the body and starting earlier in the day. Withdrawal is a nightmare. Suggest you google Augmention with RLS or read up on RLS (RLS by Buchfuhrer etc or other forums). 2mg Ropinorole was considered ok but now a bit limit. My Neuro told me to educate myself and become the expert as GP’s are not! I think he is right! Good luck.

    John

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  • Posted

    I have either a primary RLS going back 25-30 years which has progressively worsened to 24 hrs. a day and/or a secondary RLS resulting from polio nerve damage 65 years ago. I use 0.5 mg of Pramipexole with 25 mg of Topiramate three times a day and it controls my RLS very well (as long as I remember my pills). RLS is a complex condition with many causes and many solutions and it took me awhile and some bad luck to find this combination. You will have to find a solution that works for you. I’d concur that you should stick with the Ropinirole as long as it works, but if you continue to have problems you ultimately should see a neurologist, as I have found they have more solutions available then GP’s.  
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