Opioids for pramipexole withdrawal – DAWS

[tagaxel]

I’ve noticed a lot of people are using opioids to treat pramipexole withdrawal. How do you ultimately get off the opioid?

[Madlegs1]

2 points here.

One is that you will be taking such a low dose of opioid for quite a short time ,that it shouldn't be a problem.

Secondly, _ it may well be that you continue with a very low dose opioid for permanent relief of RLS.

Either way, it shouldn't be a hindrance.

[tagaxel in reply to Madlegs1]

Why wouldn’t you want to avoid opioids altogether by simply using a micro taper to withdraw from pramipexole, for example?

So, if you were trying to taper off 0.125 mg of pramipexole you have your physician also write a prescription to a compounding pharmacist who would create a compounding liquid of 0.125 mg/15 mL. You would then micro taper by removing 0.1 mL per day. That translates into 0.000833 mg per day or 0.025 mg per month. The idea of a micro taper is to trick the brain from noticing the loss. At that rate you could be free of 0.125 mg/milliliters of pramipexole in five months.

As we all know by now, these dopamine agonists are very dangerous neurotoxins. Even when tapering like this you must never miss a dose or even be more than a couple of hours late in taking the dose.

This technique has been used for years to help people get off benzodiazepines.

[Madlegs1 in reply to tagaxel]

I look forward to your considered reply in a few months.

Don't underestimate DAWS.

Good luck.

[loloball2 in reply to Madlegs1]

Does the opioid just help the rls issue but it would not be something that helps depression from the drop in dopamine correct? If I were going to slow taper .50mg Pram by cutting half of a .125mg dose is less likely to get increased depression? Is .50mg considered a lower dose? I am already dealing with depression so I am really worried about the risk of getting worse. I don’t have Rls issues thankfully!

[Madlegs1 in reply to loloball2]

I've not come across Pramipexol used for depression.

You will need to go down by very small amounts + as Sue has suggested.

[tagaxel in reply to loloball2]

I’m not aware of any relationship between pramipexole and depression. Given the horrible effects of DAWS, it could certainly increase the depression that you are already experiencing. However, if you are already depressed and you withdraw too quickly from pramipexole you are going to experience DAWS. When I first tried to get off pramipexole I told my physician that, since it affects the central nervous system and since the literature already talked about the withdrawal syndrome, that it might be better if I used a micro taper like I used to get off diazepam. He told me it wasn’t necessary because I was on such a low dose (0.5 mg pramipexole). I did it his way and the first cut wasn’t too bad but I went into pure hell when I tried the second cut of 0.125 mg. The pain was so horrible I had to go all the way up to 0.75 mg in order to stabilize. We now know that there is no such thing as a “low dose” of a neurotoxin.

To the best of my knowledge the depression is a separate issue. Also, to the best of my knowledge, most antidepressants are worthless. If you have a serious biological depression you are best served by using an MAOI (eg. Nardil) for a while. There is one new antidepressant that does show promise however, it is a derivative of ketamine and is called esketamine.

[SueJohnson]

As Madlegs1 said it is not a problem. Ask your doctor when the time comes. At the low dose and for RLS you don't become addicted.

[Mikatrap in reply to SueJohnson]

What do you define as "low doses". Mine is 1xTradonal retard 100mg at bedtime, and from today I also take a second dose of 100mg at morning, as I'm in the midst of a strong DAWS crisis. Is is still to be considered as "low doses"?

[SueJohnson in reply to Mikatrap]

200 mg is a low dose.

[tagaxel in reply to SueJohnson]

Why wouldn’t you want to avoid opioids altogether by simply using a micro taper to withdraw from pramipexole, for example?

So, if you were trying to taper off 0.125 mg of pramipexole you have your physician also write a prescription to a compounding pharmacist who would create a compounding liquid of 0.125 mg/15 mL. You would then micro taper by removing 0.1 mL per day. That translates into 0.000833 mg per day or 0.025 mg per month. The idea of a micro taper is to trick the brain from noticing the loss. At that rate you could be free of 0.125 mg/milliliters of pramipexole in five months.

As we all know by now, these dopamine agonists are very dangerous neurotoxins. Even when tapering like this you must never miss a dose or even be more than a couple of hours late in taking the dose.

This technique has been used for years to help people get off benzodiazepines.

[SueJohnson in reply to tagaxel]

Did you mean this for Mikatrap?

[tagaxel in reply to SueJohnson]

I have lost track of the string, Sue🫤 It was intended for the person who said they were using an opioid to deal with DAWS.

[LotteM]

Depends, as Madlegs and Sue write. The thing is that often you will find you still have annoying/severe RLS symptoms, even long after withdrawal from both pramipexole or another DA and the opioid you used. It also depends on whether alternative non-opioid medication for RLS (i.e. mainly gabapentin or pregabalin) will work for you.

I took tramadol when reducing the DA (ropinirole in my case), then tried gabapentin, pregabalin, partly alongside oxycontin and ended with buprenorphine. Since the latter my RLS has been few and far between.

[Joolsg]

I used tramadol then Oxycontin to get off Ropinirole. However, my RLS was still very severe on pregabalin and low dose Oxycontin. Iron infusion didn't help.So, the choice was a life of severe, nightly RLS with little or no sleep, or being dependent on a low dose opioid. I chose the latter. I've been on the same low dose of 0.4mg for nearly 3 years. Zero RLS, I sleep 8 hours every night. I have a life.

You won't get 'addicted' to the low dose opioid used to get you off Pramipexole. Hopefully you will respond to an iron infusion or pregabalin. If not, low dose opioids are highly effective.

Dr Winkelman's opioid register shows tolerance rarely happens.

Obviously we are dependent on our meds.I will probably stay on Buprenorphine for life.

[teakabeagle]

I was put on Buprenorphine as a substitute for Pramipexole and it also had the benefit of getting me off the Prami with little difficulty. I did get some mild breakthrough once I got to the last 1/8 of the Prami tablet. This lasted about 4 weeks and now I have excellent control at . 5 mg. at night.

[tagaxel in reply to teakabeagle]

I’m not sure I understand, teakabeagle. You have eliminated pramipexole and substituted a synthetic narcotic like Buprenorphine. Is that correct? If so the danger of taking a synthetic narcotic is that you ultimately experience “tolerance”. In other words, the dose you have been taking no longer works and you have to increase the dose. This ultimately causes dependence.

[teakabeagle in reply to tagaxel]

Of course there will be dependence, possibly tolerance as there is dependence and tolerance with Pramipexole and any number of medications we take for various conditions. That’s why there is withdrawal. It’s important to understand that dependence is not the same as addiction. It’s a choice you have to make.

The benefit of Buprenorphine is that it doesn’t cause augmentation like Pramipexole invariably will over time. Surprisingly, people taking Buprenorphine for RLS often do not need increasing doses, although an increase within the first year is not uncommon. Treating dose of Buprenorphine for RLS is MUCH lower than it is for OUD or chronic pain.

[Madlegs1 in reply to tagaxel]

That is not correct in the light of experience, at the low doses that are prescribed for RLS.

Besides , Dependence is not the same as addiction.

Similarly for tolerance - I have not felt the need to ever increase my dose of opioid over the last 8 years.

I'm sure you are dependent on your legs for walking, air to breathe and food for energy.

Addiction is when you need more and more and will do anything to get it.

Please don't believe all the hype over opioid addiction that is rife around the ignorant parts of society.

Mind yourself.💚

[Joolsg in reply to tagaxel]

Not true. Dr Winkelman's opioid register is proving that tolerance rarely develops for RLS patients on low dose opioids.

[tagaxel in reply to Joolsg]

For years people thought that the dopamine agonists worked well. I was on Mirapex/pramipexole for over seven years before augmentation set in. Opioids just seem like the last possible resort but of course if that’s all that works for you, then you have to go with it. Did the other drugs like gabapentin, pregabalin and Horizant not work for you?

[Joolsg in reply to tagaxel]

No. Drs Buchfuhrer and Berkowski believe it because DAs cause permanent damage. Dr Winkelman's opioid study is encouraging. Tolerance is rare in RLS patients at low doses used for RLS.

The DAs are unique in causing worsening of disease symptoms.

If we had beeb treated with iron infusions before DAs, who knows how many of us would be med free?

[tagaxel in reply to Joolsg]

What do you mean by saying the dopamine agonists cause permanent damage, Joolsg? And who are the physicians that you mentioned?

[Joolsg in reply to tagaxel]

Dr Buchfuhrer and Dr Berkowski are top RLS experts and helped write the Mayo Clinic Algorithm for treatment of RLS. They see and treat thousands of RLS patients every year. Most UK neurologists will see around 10 to 50 maximum so do not see the patterns that Dr Buchfuhrer and Berkowski see.There are also research articles confirming that pregabalin and gabapentin and horizant do NOT work on many patients who have augmented on DAs.

We know the D1 receptors are overstimulated and up regulated by Ropinirole etc. That's what drives the worsening of RLS. Often, those receptors, and others suffer permanent damage. That is what causes DAWS ( dopamine agonist withdrawal syndrome). Some patients never recover.

If dopamine receptors are damaged, iron cannot be effectively taken up on the brain. That is probably why infusions do not work for so many of us.

Dr Berkowski has an excellent website at Relacs and you can read and listen to many of his webcasts.

[TheDoDahMan]

A "low-dose" opioid regime seldom induces tolerance. For example, I have been on low-dose methadone for 5 years - I started at 10mg/day and am still at that same low dose. The same is usually true for those taking low-dose buprenorphine. But the difference in our lives is overwhelmingly positive.

[tagaxel in reply to TheDoDahMan]

Thanks, DoDah, are you on methadone because of DAWS or because none of the other meds work on your RLS?

[TheDoDahMan in reply to tagaxel]

The latter.

[nocturne]

I've been taking one Codeine-Tylenol #3 pill at night for more than a year. It controls the RLS, and I haven't needed to increase my dose.