Detox from Neupro: All, After 6 years... - Restless Legs Syn...

Restless Legs Syndrome

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Detox from Neupro

scppie profile image
9 Replies

All,

After 6 years of a Neupro patch (at 6mg) and 7 years before that of taking Mirapex, I am on day 13 of full detox, It took 30 days to taper down to zero Neupro, but I made it. I also was detoxing off of 100 mg of Trazodone, which I had been taking since before I started Mirapex.

This detox process is not for the faint of heart. Except for two of the the last three nights which were better, I did not sleep more than 3 hours per night in total for about a month. Some nights during the taper and detox of course were no sleep at all.

I return to see my neurologist tomorrow, and frankly I'm not sure I need anything at all for RLS. I had a bad night the night before last, but that day prior I was on a bus for 4 hours and then at a 4 hour football game (too much sitting for sure)! I do think that I need to add something back in for insomnia, and my sleep hygiene is absolute garbage now, so some retraining of myself will be in order. I've experienced a significant decrease in arthritis pain in my hands since I began the taper and detox.

This drug is absolutely toxic. I threw each set of patches away in the garbage when I went down to the next lower dose so that I wouldn't be tempted to restart. The augmentation over the years was the reason I consulted a new neurologist who is one of the nation's leading experts. I wasn't aware that the standard of care had changed so much in the 6 years since I had been prescribed the patch by a neurologist at a different academic medical center.

My point is, detox is horrendous but possible. To anyone being prescribed a dopamine agonist, RUN DO NOT WALK. There are other options.

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9 Replies
SueJohnson profile image
SueJohnson

Congratulations for coming off it !!! If you want something for insomnia, I would suggest ativan or ambien or if you want I can suggest some OTC ones which are less effective. Have you had your ferritin checked? Improving it to 100 or more helps 60% of those of us with RLS. If you do find you need medication for your RLS I would suggest gabapentin or pregabalin. Just curious - who is your doctor?

scppie profile image
scppie in reply to SueJohnson

Hi. Yes, my ferritin is actually high so no issue there. I go back to the neurologist tomorrow and it is likely that gabapentin will be prescribed if we jointly decide it is needed.

SueJohnson profile image
SueJohnson in reply to scppie

If it is prescribed let me mention a couple of things as not all doctors are aware of this, although yours may very well be since you said s/he is one of the nation's leading experts. (Would still love to know who that is) . It takes 3 weeks to be fully effective so wait for that time before increasing it. Then it is usually advised to increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment at Https://mayoclinicproceedings.org/a...

scppie profile image
scppie in reply to SueJohnson

Thanks!

Joolsg profile image
Joolsg

Very brave to go from 6mg Neupro to zero in 30 days! I can imagine how hellish that was.

Wonderful to hear you may not need meds to control the RLS.

Everyone on here will agree with your views on Dopamine Agonists.

martino profile image
martino

I have been on 2 mg for about 5 years. I can attest to the efficacy and thankfully have not had need to increase. As I take Pregabelin as well and also Tramulief I suppose the combined therapy has helped me. Thanks for sharing your experience.

Annieapple profile image
Annieapple

how long did you stay on 2mg patches before going to 1mg? Then how did you reduce the 1mg? Alternate days or cut patch in half? Many thanks

Merny5 profile image
Merny5

scppie, congrats!!

Seaux profile image
Seaux

I completely agree with you. Even still, neurologists who are heads of neurology departments at top universities/hospitals, are still prescribing DAs as first line treatment for RLS. My neurologist wanted to switch me from Neupro to Sinemet!! And she is the head of the neurology department at a large teaching hospital!! Needless to say, I refused her suggestion and switched doctors.

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