Finally some relief!

After suffering with 24/7 all over the body RLS for 25 years, I found a Movement Disorder Clinic in Denver, Colorado. Took 5 months to get an appointment but has been SO worth it! I literally had no quality of life. I had seen many neurologists over the years, was prescribed Mirapex, requip to max dosage, 4mg Neupro patch which all eventually made me so much worse. Dr. Rajeev Kumar at the Rocky Mountain Movement Disorder Center assesed me and said I was in the top 1% of people who suffer from RLS. He initially prescribed gabapentin (up to 1,800mg), which didn't work, then on to Horizant, then Lyrica to no avail. All the while I was still on the 4mg Neupro patch. The goal was to find a drug that worked then wean me off the patch, which was making me worse. After trying all the different drugs he finally prescribed Methadone 5mg twice daily. I have relief for the first time in 25 years, AND I have been able to wean off the Neupro Patch! Dr. Kumar has said that it's unlikely I will experience augmentation with the methadone but he's not ruling it out because my case is so severe. If needed, he will refer me to a pain management clinic for further treatment, I'm thrilled and I am mostly symptom free and feeling great!!

13 Replies

oldestnewest
  • That's a fantastic result!

    So good that you found somewhere that followed a responsible pathway to get you relief.

    Will you be able to stay with the methadone long term? With your local physician?

    Well done for hanging in there.

  • Great you found a doctor who was open to try a med which most doctors in the USA would not use. and definately NOT in the the UK. The only meds that cause augmentation are all the dopamine meds, and very rarely tramadol. So, the methadone should be safe from augmentation.

  • Great you got the right treatment for you. In Ireland & UK the Drs would be very reluctant to prescribe methadone.

  • Most doctors in the US are very reluctant to prescribe methadone. I'm very lucky that he is so progressive in his treatment.

  • So pleased for you - relief must seem even sweeter after so much suffering.

  • That's great. Really pleased you have found relief at last.

    Jools

  • Thankyou for this recommendation I will add it to my list

  • Thank you all! Most neurologists in the US won't prescribe methadone for RLS. It's too bad, as it's an extremely safe drug. They only prescribe dopamine drugs which make RLS so much worse in the long run.

  • So good to know about the meth.

  • There is quite an interesting piece about methadone in the latest Restless Leg Foundation magazine "Nightwalkers"

  • Good for you! Can only imagine the relief after so many years. Let's hope the methadone keeps working.

  • Glad the methadone is giving you some relief. I too have suffered for 10 years from a full body RLS experience--it's horrible, I know. I understand what you've gone through.

    I went through similar routes to find relief, but not quite as many medications as you with my neurologist. I finally found out how to get off my Requip through the help of a recommendation from the folks in this site--a once a day dose of iron bisglycinate--an OTC supplement. I take one 28-mg capsule at night before bedtime with a glass of orange juice. That alone has made it possible to wean off my requip from 12 mg extended release, down to now 6 mg. Been titrating down with help from my primary doc by two milligrams each month. I also take a fairl low dose of tramadol and gabapentin twice a day.

    My goal is to get off the Requip entirely and just take the iron bisglycinate supplement.

    You might want to try iron bisglycinate at bedtime with orange juice--a necessary combo. The iron also makes one sleepy--kind of nice benefit. I had taken other types of iron supplements and nothing worked until this magic pill--I swear by it now. It did the trick and stopped the augmentation cold.

    Bganim1947

  • Thank you for this information! I will look into iit asap!

You may also like...