Medicine Not Working

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I have been on Ropinirole 0.5 mg for about 2 years.  I've never thought it to be very effective and lately it doesn't seem to be helping at all. I can normally get through my day without taking them and then take two before bed.  Most nights I have to fight to sleep.   I am seeing my Doctor tomorrow and would appreciate any suggestions as to whether I should increase the dosage or ask the Dr to prescribe something different.  I have heard others talking about quick release as opposed to slow release tablets.  I didn't know that any such thing existed.  Any help would be greatly appreciated.  Thank you

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8 Replies

  • Posted

    Hi,

    If a Dopamine Agonist (DA) loses effectiveness (=Tolerance) don’t increase the dose. Most GP’s will increase the dose but are unaware of the effect on RLS sufferers. For most of us the effects are:

    1. RLS spreading to other parts (arms, hands, rest of body)

    2. RLS starting earlier in the day.

    This is called Augmentation. Try googling RLS Augmention or look on website and take a copy with you in case your GP is not familiar. A different DA may work eg Neupro patches, a GABA may work (eg Gabapentin). You need to come off your DA slowly and for the transition to your new drug Tramadol is the ideal. It is an opiate but is highly unlikely to be addictive and very effective. I was on Tramadol alone for over 2 years with zero RLS and no addiction before reaching Tolerance.

    Be aware that anti depressants eg Amitriptelene trigger RLS.

    Look for your triggers (spicy food, irregular sleep times, alcohol, etc), a food diary helps identify them. Also ensure your ferritin level is >70, your GP can arrange to measure but beware of him saying it is “normal” as 20 is normal for non RLS sufferers. 

    Good luck!

  • Posted

    Thank you Beagle.  Your answer was very informative.  I saw my Dr. today and repeated some of the info that you had given me.  He agreed with all except for the fact that Tramadol is not very addictive.  The regulations on that drug had tightened up and they are not very stringent.  I have decided to see a neurologist as I don't feel my GP is very versed in RLS.  Thank you again for all the info.  I do appreciate it. 

  • Posted

    Well done, sounds like your GP is ok. Hope Neurologist is well versed in RLS. There is a clamp down on opiates at the moment but they are an essential part of treatment for RLS. Neurologist may agree hopefully as you may need it one day. My Neurologist told me to become my own expert, to read RLS book (by Buchfuhrer, Hening etc), join all the forums, RLS-UK etc.  I found that my GP gained confidence in me and generally prescribed what I suggested. RLS knowledge is rather poor amongst NHS! There is a lot of support amongst the sufferers on the various forums.

    Good luck

    John

    • Posted

      Hi Beagle. I will try and get hold of the suggested book to read. I tried Gabapentin for RLS but had to come off after 14 days. I am now taking Ropinirole but find it is stopping me goin g to sleep and I feel sleepy and have a foggy head all day, plus getting RLS at different times, 8am this morning. I do hav e to take Amitriptyline 35mg at night plus 1 Zopiclone ( I have suffered with headaches most days for 16 years I an told it is a disc in my spine touching a nerve) Any suggestions would be appreciated. Thank you.
    • Posted

      Hi,

      Is your RLS any different if you don’t take Amitriptelene? There is a list of anti depressants that don’t affect RLS on site. Will see if I can find it.

      John

    • Posted

      List of drugs NOT good for RLS. Just found it on the US site:

      and click on medical alert card.

      John

    • Posted

      Thank you. After having RLS most of today I am going to try and cut down the Amitriptaline and see if it helps al,so try and find the UK forum site.

      Thank you.

  • Posted

    2 most effective things for me, soaking in a hot bath and using a bean bag as follows:  I make my bean bags with flannel and the cover with fleece.  8 inches by 20 inches, fill with approximately 6 cups of winter red hard wheat berries (so when laying flat about 1 inch high).  Heat in microwave for 2-3 minutes, take out and move around to mix wheat berries, and heat another 2-3 minutes.  Lie in bed face down with rear end up (looking cute:-), and bag at back of knees, between both legs, touching thighs and calfs.  Instant relief.  The wheat berries will stay warm for up to 30 minutes. Adjust legs to what is comfortable over time. 

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