Hello everyone - the RLS saga continues

It's been a while since I posted and much has happened over the past few months (new granddaughter, some finger surgeries, Christmas accompanied by numerous household disasters). After briefly going back to my old neurologist after the sleep researcher's Mirapex withdrawal program landed me in the hospital, I have now gone back to the researcher. The old neurologist had started me back down augmentation road again. This time the researcher decided I needed to wean off slower that the first time and bridge the withdrawal with the Neupro patch. I'm 11 days off Mirapex; sleep is intermittent if I get any at all. Not using a Neupro patch. Has anyone out there actually weaned off Mirapex and regained their life back? I'm starting to feel that is not even possible. Trying the Methadone right now - it sucks.

Terrie

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  • I am trying to come off Mirapex (.50mg.) using a 2 mg. Neupro patch as a covering agent. I have managed to get the Mirapex down to .125 but still

    have lots of RLS activity. At least I am lowering the amount of Mirapex which

    had augmented. I may have augmented on the patch as well and that is

    why I am not experiencing the results I would like, although the past two

    nights have been a little better. You say that methadone sucks.

    Could you be a little more specific as I am thinking about going on it?

  • I think the problem with the methadone was my dosage. The emailed instructions from my doctor said to start with 2.5mg methadone and I could increase by 2.5mg every 5 days until reaching a maximum of 10mg/day. The instructions on the prescription bottle said to take 5mg from the start. Unfortunately I thought that was a misprint and took only the 2.5. The recommended starting dose according to the hospital where I am followed is 10mg. In other words I wasn't taking enough to subdue a bird! I contacted the hospital and they told me to do 7mg tonight. Hopefully that will work and I'll let you know. Last night I did 10mg of oxycodone and slept 9 hours so I'm starting to chip away at my sleep deficit. The problem with oxycodone is that it doesn't last as long as the methadone so after about 4 hours I wake up with symptoms and have to take another oxycodone. I'm also told that you have to take the methadone before becoming horribly symptomatic or it has trouble settling the symptoms.

  • Hi Terrie, good to hear from you but wish you had better news.I came off Mirapex 15 months ago usimg strong painkillers so I am suprised the Methadone is not helping you, maybe try a different opiate.After beinh ofg Mirapex for 8 months I went onto Neupro patch but had a reaction to the adhesive so had to discontinue. Next I tried Requio (Ropinerole) but felt unwell on it so I came off that on last Wednesday. Had a few rough days and night since but hopefully 5 days on I am now over the worst, The first few days are tough but I am using strong pain killers and have a few "emergency" sleeping tablets .The 2 nights I used them I slept and the 2 other nights were bad-constant pacing.If you have augmentation on Mirapex and want to stay with the dopamine meds then Neupro patch is your safest bet as it has the lowest rate of augmentation , good luck .,, Pipps x

  • Thanks Pipps. Good to hear from you. I've been off the Mirapex for 12 days now and off the Neupro for 6. It was interesting - the doc overlapped a 1mg Neupro and .125 Mirapex for one day, then just a 1mg Neupro for 3 days and finally a 1mg Neupro just worn at night for 3 nights. He gave me oxycodone to use for the first 3 -4 nights after weaning from the Neupro. That worked, but when I discontinued the oxycodone everything tanked - my mood, constant pacing, small convulsions. There were even times when I looked at things I used regularly (like a tape measure for sewing) and had no idea what they were or what you did with them. Called the doc back and he started the methadone but I think the treatment amount was way too small - 2.5mg. They upped it to 7 for tonight and I'll see how it goes.

    Congratulations on being off the Mirapex for 9 months! I was told the same story about Neupro but when I tried to switch to it this Fall, I augmented very quickly and had to increase the dosage on a weekly basis. I also had sleep attacks while taking it. The theory is that because it is sustained release you don't get the augmentation, but you can't prove that by me.

    I hope things continue to improve for you off the Requip because I understand that is almost as difficult to drop as the Mirapex. I am trying Methadone again tonight at a larger dosage (the original prescribed dosage on the label was 2.5 mg, but they usually start RLSr's at 10mg so tonight we are increased to 7.) Last night I used oxycodone (10mg) and it allowed me to sleep. If the Methadone doesn't work, the oxycodone may be the answer for me. There isn't the problem of addiction when you are just taking them for sleep (at least that is what I am told).

    Again, congratulation on being off the Mirapex. I know just hard that is to do.... it's no small accomplishment.

  • Terrie, I took Maripex for several years and did some weird things because it triggered an uptic in compulsive behavior, some good and some very bad.

    I went thru a small withdrawal period while adjusting to ropinirole extended release, but the weird behavior only stopped when I realized how destructive I had become and thru sheer will power straightened up and have been on ropinirole for at least 6 years.

    Without one of the dopamine agonists I would have either gone totally mad or off the deep end of the pool. Every person is a little bit different and reacts a little bit differently, but if you hang in there and don't ever let anyone tell you a cure had taken place or will take place. You are stuck with this RLS monster for life.

    I have watched it play out in my ancestors and siblings. RLS is a life sentence . Get used to it and find a way to be as comfortable as possible. That is the best that it gets.

  • It's funny. I could never accept the fact that this was a disease - I always thought of it as a genetic anomaly because my ancestors and children have it as well. It hit me like a brick when the doctor referred to this "disease" as a "long, dark tunnel". I had to wrap my head around that one at first. It is a lifelong disease for which we can control the symptoms...... at best.

    I am off the dopamine agonists now (6 days) and have used oxycodone and will try methadone tonight at a larger dose. They assure me one of those two will probably work fine for me. DAWS (dopamine agonist withdrawal) is something I never want to experience again.

  • Terrie, I've done the lot as well. Mirapex , Neupro a a myriad of others that I can't remember all the names. Anyway, I stopped. Nothing ! Totally drug free and guess what ? No difference. I'm the same now as when I was taking the various drugs. The RLS is still there but for some reason I feel better knowing that I don't have to worry about what the various side effects of the medications were doing to my body.

    Good luck

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