Dopamine agonist withdrawal

[chirosyd]

New to the Board. Wanted to share my experience with others. Long story short.
58 y/o very healthy male with moderate to severe case of Primary RLS from age 30, inherited it from my father. Sinemet - augmentation, then Requip - augmentation, then Mirapex - augmentation after about five. Went to see Dr. Christopher Earley at John Hopkins. He recommended withdrawal from Mirapex for 10 days and then re-eval for next step. Withdrawal was not as bad as I had anticipated, as I have taken a dopamine agonist every night for the past 28 years except for one night by accident. It has been two weeks since the 10 day withdrawal, and I am now on no medication. I have been sleepinig 4-8 hours per night with no prescription medication. I have a script for Lyrica if I choose to try it. I have leg, arm and axillary tingling, but nothing else. If my symptoms do not get worse, I will choose to stay medication free. It feels good to get off the dopamine agonists. Just thought I would share my experience with others. Obviously, every medical condition/history is different. Just my experience. I would have never thought getting off these dopamine agonists would have such a positive effect on my RLS. Augmentation is nasty!

[Polar Bear]

Welcome to the discussion board.
When you came off your DA did you have any other medication for support during the withdrawal period?

To have overcome augmentation, being able to handle your current symptoms without medication, what joy.
And to know that should your symptoms become worse, you have another method of treatment.

Thank you for sharing this, it's a very positive post.

[ViewsAskew]

I hope it inspires others to try coming off, too! Many of us are lucky and our symptoms are either the same as before, or not much worsened. Some of us, not so as our symptoms have worsened considerably, but that's the minority, thankfully!

[JimmyLegs44]

Glad to hear your RLS is greatly diminished! I too am interested to know if you took anything to get thru the withdrawal period. I just failed in my third "drug holiday" attempt in the last 8 months. The first time, I tried on my own with nothing to assist, and gave up after 3 nights. The second time was under doctor supervision with the addition of 300 MG Gabapentin and also Clonodine (which turned out to be a big mistake...made me a restless zombie and almost fell several times during the night). That lasted only 2 nights. Went 46 straight hours without sleep. Felt like bodily systems were starting to fail. The most recent failure just ended last night, after 15 nights, also under doctor supervision. He tried to wean me off the pramipexole VERY slowly, by .0625 MG every two weeks, with no other drugs to assist. I'm only taking .375 MG per day, so this would have taken 10 weeks to get completely off this traitorous drug. The first two weeks (.3125 MG) were tolerable, although certainly not great. Then last night I dropped down to a total of .25 MG, and had a terrible night. Arm went crazy for several hours, then it was the leg's turn. I've decided I've tortured myself enough...next time I will have serious help. I've made another doctor's appointment and I believe the next step will be to use an opioid to help me thru this hellish period. He's been hesitant to prescribe an opioid, but he seemed willing at the last appointment, after exhausting all other options. The hope of reduced symptoms and possibility of being drug-free will get me thru the withdrawal period eventually. I can't believe how hard it has been....this drug scares the hell out of me. I've been on it for 10+ years at a maximum of .375 MG per day, which doesn't appear to be a very high dose, but getting off of it has been a major hurdle. I've had my unfounded suspicions that the drug has permanently damaged my dopamine receptors and that I will be forced to take it (with only moderate relief) for the rest of my life. Your story gives me hope, so thank you for sharing!

[ViewsAskew]

I definitely was able to stop using it, JimmyLegs44 - but not without an opioid. I tried on my own and with other subtances with my doctor. But, there is a certain point where augmentation just is too much to resolve without an opioid. Orrel has been through this several times, too - it hasn't worked using other substances.

Going back ten years, everyone here who's used an opioid has been successful. Only a handful who haven't used an opioid have been successful. I think it's the degree to which the person is augmented, but have no way of proving that. Or of determining what a high level vs a mild or moderate level is.

[Orrel]

If one uses an opioid for dopamine withdrawal, how does one get off the opioid?
Is it difficult and how long does it take? I think that I have read that getting off
an opioid will itself trigger rls. Is this correct?

[ViewsAskew]

Some people stay on them, so they don't care. Some people move to another drug. Generally speaking, if you stop the opioid within a month or so, you shouldn't have issues. It's not hard, you don't have to do anything special. It's when you've become dependent that a person has issues. Dr B says that the true opioid withdrawal causes sensations similar to RLS/WED, but are not it. That is fascinating in itself. But, other people say it's RLS - so no idea which is really true.

But, stopping it relatively quickly - say within 1-2 months - shouldn't cause most people any issues. And, you might be able to stop it in 2-3 weeks.

[Orrel]

I want to get off the augmented 2 mg Neupro patch but of course this is easier said than done. I recently went to a local
neurologist who I discovered from the RLS Foundation 's search engine treats RLS. He agrees that I need to
get off the patch. He is proposing that I wean off the 2 mg patch by going to the 1 mg patch for fourteen days, leaving the last patch on for 3 days
then stopping it altogether. As a covering agent for the weaning off process he is proposing clonezepan 0.5 mg 1/4 or 1/2 tablet at supper
and 1/2 or 1 tablet at bedtime. Does anyone have any thoughts on this? He is not open to opioids and I had a few issues with
Lyrica (300mg) when I added it to the Neupro patch.

[ViewsAskew]

I just watched Dr Allen speak - he says that in all but the very worst cases that people are OK after day 5 even without an opioid. I made it to day 5 once - but not through it - so I can't comment as to how that works. I seem to recall one person here used nothing and it took her 2 weeks without an opioid.

[jaybird8]

Chirosyd...where did you go? I'd love to hear your response as well. Just visited Dr. Early myself today. My guess based on my own appointment is you had no additional medical assistance. He would like to see me off Mirapex as well. I am currently on 0.75 and itching to move it up. He wants me to step down in .25 increments every 3 days and then 10 days totally off...21 days to try to get off of this awful med. As much as I want to, I am extremely anxious and wondering if I am strong enough to get through those first 2 to 3 days of the drug free period...a period he suggested I would not get a wink of sleep. Of course...I have to get through the step down phases first to even get to that test.

I have been fortunate to not have suffered the great personal losses that many of you have, but am fearful of the path ahead if I cannot get away from Mirapex. Any guidance from those who have tried this before would be greatly appreciated.

[Orrel]

Jaybird8: I am going to see Dr.Earley on Sept.1 for a consult. I realize he's not too keen on helping agents but I feel I need something
or I won't make it. For help in getting off the 2 mg Neupro patch, see my above posting for June 27. I hope I have it out of my system
by Sept.1.I started the 1 mg patch last night at 9 p.m. along with the clonazepam which enabled me to get some sleep but had lots of rls
breakthroughs today. I realize I won't get much sleep when the withdrawal really gets going.It won't be easy. We must go forward
because we cannot go backward into everlasting augmentation. Short term pain for long term gain.

[ViewsAskew]

I surely wish I knew the answer. I can only tell what happened with me. I tried three times to stop pramipexole. I was up to .75 - I started at .125 and increased to .75 within a year. I cut back myself and things actually were better. Not great, but better.

Each time I stopped, I was unable to make it more than 5 days. Dr Allen says that he believes that it's all over after 5 days. Could I have been OK on day 6? I guess I'll never know! I just know that on Day 5, it wasn't any better than the first 4.

In writing to Dr Buchfurher, he suggested a strong opioid was the only way to get through this. And, it worked for me. I had tried mild opioids using some meds I had from dental work (I do NOT suggest anyone do this!) - it didn't help.

We had a member here several years ago - Brandy. She was augmented. She stopped on her own. It took almost three weeks, if I remember correctly, for her to get through it.

Dr Buchfuhrer has said on in his patient letter responses that it can take LONGER to get through withdrawal without an opioid.

Clearly - the doctors do not agree on this one!

[Orrel]

But what do you do if you have a doctor who is unwilling to give a strong opioid? Even if I went to
Dr.B, I would still have to find a specialist here in Ontario who would be willing to give me the
opioid he prescribed. Many of us end up toughing it out because we have no other practical choice.

[ViewsAskew]

But what do you do if you have a doctor who is unwilling to give a strong opioid? Even if I went to
Dr.B, I would still have to find a specialist here in Ontario who would be willing to give me the
opioid he prescribed. Many of us end up toughing it out because we have no other practical choice.

Dr's Allen and Earley would say that if you can last 5 full days, by day 5, you'll be OK. They would say you do have a choice.

Have you ever made it a full 5 days? I didn't = I gave up on day 5. So, I don't know what day 6 would have been like.

EeFall stopped multiple times. He always made it through in about a week, IIRC.

[Orrel]

As I posted on June 27, I am in the process of weaning off the 2 mg NeuPro patch and am using a small dose of clonazepan.
I went from the 2 mg patch to the 1 mg patch on Monday June 29 and will use my last patch on Sunday July 12.
I thought the smaller dose would cause me lots of rls but after a few days I am noticing a marked lessening of symptoms although
insomnia remains a problem in spite of the clonazepan. Has anyone else had this experience of improving rls symptoms while
reducing the dose of a DA? May this mean that the "victory lap" from 1 mg to no NeuPro will not be as horrendous as I fear?