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RLS, PATCHES

Posted , 6 users are following.

BILLYBIGBANANAS
BILLYBIGBANANAS

I NEED CONFIRMATION THAT RLS PATCH ARE OR ARE NOT AVAILABLE

IN UK (SOUTHERN HEALTH) HAMPSHIRE

THANK YOU

MY GP SAYS NO, BUT I HAVE HEARD DIFFERENT.

BBB

0 likes, 16 replies

16 Replies

  • beagle
    beagle BILLYBIGBANANAS

    Posted

    Hi Billy,

    I lived in Staafordshire up to last year and my doctor gave me Rotigotine in patches. I initially was on 1mg patches but increased to 2mg as they became less effective. They should be replaced after 24 hours which I did before bedtime for max effect. They were effective and the only side effect was head aches but they became less intense with time. I had a bad fall due to feinting whilst using 2mg patches but that's because I have low blood pressure. Eventually they stopped working after about 6 months and dopamine agonists are no longer effective for me (Ropinorole, Pramipexole and Rotigotine). Now on Tramadol (an opiate) which is working without side effects. Good luck with your doctor and if he won't help ask to be referred to a specialist, it worked well for me as the doctor had more confidence prescribing things recommended by a specialist.

    John

  • lesd05
    lesd05 BILLYBIGBANANAS

    Posted

    I live in Manchester and have been using 2mg patches for 16 months. They are readily available on prescription as they are also a prescribed medication for Parkinson's disease at higher dosages.
  • martin45332
    martin45332 BILLYBIGBANANAS

    Posted

    Hi Billy

    I was prescribed rotiginone patches today!

    • BILLYBIGBANANAS
      BILLYBIGBANANAS martin45332

      Posted

      HI MARTIN

      WHICH AREA IN UK DO YOU LIVE, NOT SURE WHY MY GP SAID PATCHES NOT AVAILABLE IN UK FOR RLS.

      BBB

    • martin45332
      martin45332 BILLYBIGBANANAS

      Posted

      Hi Billy

      ​I live in Southampton. My doc has only given me 14 1mg patches to see how I get on with them. I couldn't manage ropinirole or pramipexole so the doc thinks I will have an intolerance to the patches and he mentioned the cost! It was a neurologist who wants me to try the patches and failing that gabapentin or if not that then levadopa. Ho hum! I am hoping that the patch plus the tramadol will give me the help I need. I also take some clonazepam when I go to bed

    • BILLYBIGBANANAS
      BILLYBIGBANANAS martin45332

      Posted

      THANKS MARTIN,

      I LIVE IN HAMPSHIRE PETERSFIELD, I AM NOT GETTING ON TO BAD WITH ROPINIROLE BUT ONLY ON 0.25 MG VERY LOW DOSE MUST ADMIT I HAVE TAKEN 2 ON SOME NIGHTS, NICE TO KNOW THAT THERE IS A CHOICE OUT THERE THOUGH,

      MUST FIND OUT WHY MY GP SAID THEY ARE NOT AVAILABLE IN UK,

      HAVE JUST CHANGED MY GP FOR OTHER REASONS, BUT STILL AT SAME SURGERY.

      SOME TIMES I GIT A HEADACHE IN MORNING, NOT SURE IF THIS IS CONNECTED TO THE DRUG.

      BBB

  • Boomiesmom
    Boomiesmom BILLYBIGBANANAS

    Posted

    How severe were the headaches experienced by Rotigotine (Neupro) patches on those who have used them?   I am on 1 mg and have severe headaches.  Beginning to augment and am afraid to go to 2 mg because 1 mg are bad!  Also beginning to augment after about 1 1/2 months.

    Billy - my boxes say manufacture for UCB, Inc Smyra, GA (USA) Made in Germany.  Google Neupro patches there is quite a bit of info on line.

    • beagle
      beagle Boomiesmom

      Posted

      My headaches were daily initially but eased after a week or so. I get weekly migraines and use zomig. I was so desperate I preferred bad heads to RLS symptoms. Once you start augmenting it is time to try something else.

      Good luck

      John

    • Boomiesmom
      Boomiesmom beagle

      Posted

      My patches headaches started kind of bad and have gotten progressively worse.  Only on the patches for about 1 1/2 - 2 months now.  Can feel the pounding of vessels and arteries in my head.  Have had migraines, clusters, etc., for years then they stopped about 15 years ago.  These don't quite feel like regular migraines and are now lasting all day long. OTC migraine meds do help but lessening in effectiveness over time.  Know I need to try other things for RLS - but I've been on almost everything.  Will just be switching around augmented meds to see what might work again for a while.
    • beagle
      beagle Boomiesmom

      Posted

      Tried Tramadol? A opiate but non-addictive. Lasted longer on it than Gabapentin or dopamine agonists. Had insomnia with it but regulating time of taking helped. Had odd bad nights and periods but stopped potatoes with evening meal and I'm sleeping like a baby with no RLS! Started 1 cup of coffee a day, 1 pint a beer a day and still good. Can't believe something innocuous like potatoes could be a trigger but am best I've been for years - hope it lasts. Wonder if potatoes are excluded in Fodmap diet?

      John

    • martin45332
      martin45332 beagle

      Posted

      I have been taking tramadol for pain but found that it helped stop the urge to move! How much Tramadol are you taking? The max is 400mg a day and i am taking 250. It lessens the pain but not as much as i would like
    • beagle
      beagle martin45332

      Posted

      I take 2x50mg at about 8pm. I used to take them later and got RLS starting up as soon as I got into bed and then had insomnia! Just adjusting the time made an enormous difference.

      John

  • Boomiesmom
    Boomiesmom BILLYBIGBANANAS

    Posted

    How many have used Tramadol with success?  How does it compare to Norco or Tyl/Codeine?  Lidocaine patches are really great for easing pain from RLS.  They are prescribed at my health plan for only diabetic neuropathy and shingles but a friend gave me some for my RLS pain.  Some nights I look like 'marshmellow man' I have so many patches on legs, feet, etc. but it does tame pain really well and quickly.  Sometimes relieveing pain helps with 'jumpies', sometimes not but RLS pain is also a big problem for me.  Cost in USA without insurance is very high - $450-500.  Luckily my insurance cost is only $25.  Don't know about UK costs.
    • beagle
      beagle Boomiesmom

      Posted

      Don't know any of the drugs you describe other than Tramadol (maybe they are American drugs?).

      Tramadol is a big success for me, works when alternatives don't and no side effects.

      John

    • Boomiesmom
      Boomiesmom beagle

      Posted

      Norco is  name for Hydrocodone/Acetaminophen (active ingredient in Tylenol OTC pain med).  I am now using 10 MG when 5 mg stopped being affective.  It's an opiod med.  Robaxin (muscle relaxant) is methocarbamol (500 mg) worked wonderfully for years and years, then RLS 'overpowered it'.  I still use it in conjunction with other meds to tame the pain and 'jumpies"  Tylenol/Codeine is just acetaminophen 300 mg and30 mg of codeine.  Tramadol is available here.  think I used it for a short while without results.  Perhaps I need to give it another try.  Unfortunately there seems nothing new coming down the line.  Gabapentin(neurotin) worked for a while but mental side affects when doseage was increased above 4-500 mg.  Glad the tramadol works for you.  Interesting how things work for one person and not another.
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