Getting off Pramipexole

[DizzyDuxx]

Hi,

I recently posted here and got a lot of very valuable feedback from this community.

Quick outline: After 13 years of taking Pramipexole, I started to develop worsening symptoms: higher frequency, higher intensity and RLS symptoms in my arms too: Augmentation. You all said to get off Pramipexole, so I am currently waiting on my Blood values (Iron, Vit. B, Vit. D) and I will talk with a neurologist in the coming weeks.

My questions now are about getting off of Pramipexole.

- I will reduce the dose (3x0,125mg) with 1/2 over the next couple of months.

What I want to know is:

1. How will the reduction impact my sleep and/or symptoms?

2. How long will this approximately last? Days, Weeks?

(You all mentioned that reduction will "eventually" settle).

3. What can I do to reduce the possibly worsening symptoms?

4. Will the situation get back to "normal", even with the reduction?

(When I take my 3x Pramipexole now, I can sleep perfectly (without waking up).

Thanks in advance people!

Note: for the very sharp people, in my previous post I mentioned I took 4x0,125 pramipexole. I did this for 1 week and then I posted on this forum, so I immediately reduced the dose back to 3. Just to not let my body get used to the 4. This went pretty well, with 1 exception, where I took 1/2 extra (I wasn't ready to not sleep that day haha).

[Hidden]

Hi.

If you're currently taking 3 X 0.125mg tabs then I suggest, as I think you're saying , you reduce to 2 1/2 tablets for 2 weeks, then 2 tabsfor2 weeks and so on.

Each reduction may cause withdrawal effects which are a worsening of symptoms and increasing sleeplessness.

These may begin within 24 hours, get worse over 2 to 3 days then decline and settle to a level within 10 - 14 days. There is some variation between individuals,

At the end of the two weeks, symptoms may settle to what they were like before the reduction or possibly less.

As the dose gets less, two things may happen

1) Augmentation gets less, i.e. may fade from arms or other parts get less intense, disappear during the day etc.

2) Withdrawal effects may get worse. The worst time will be when you reduce from half a tab to nothing. Be prepared to get no sleep at all.

Two things that can be done to reduce withdrawal effects. One is to make the reductions even smaller. The other is to ask your Dr for an opiod and/or a sleeping aid. Temporarily.

What is "normal"?

Once augmentation and withdrawls have settled you will find symptoms are better than they are now.

However, you will still have RLS, it won't have gone away. It may be the same as before you ever took pramipexole, but it will probably be worse.

One option is to have a "washout" period i.e. wait a few weeks after you've totally stopped the pramipexole. This will give you a "baseline" of what your symptoms will be like.

This isn't recommended these days. What may be better is to consider what you are going to replace the pramipexole with. It's also a good idea to start thereplacment at least a few weeks before stopping the pramipexole. Really you can start when you like, assuming of course, that it's not another dopamine agonist, which would be mad!

When you get your iron results, if it's safe for you to take iron (TSAT<45%) and ferritin is less than 75 then you can start taking an orla iron supplement. An over the counter product is better in some respects than a prescription iron.

Hopefully, you're also looking into if you can identify any aggravating factors that may be making your RLS worse.

[DizzyDuxx in reply to Hidden]

Thanks Hidden..

I could have sworn I saw another response from Elf…

The “normal” I mention in the post, is basically the point where the new dose relieves the symptoms so that I can sleep again, so you have answered this question: 10-14 days.

Right now, my dose of 3x0,125 mg lets me sleep perfectly fine.

I know a reduction of dose will lead to less sleep, because of the symptoms. I just wanted to know for how long this would be

Just to add some info:

Ferritin level is 101 (but I did eat breakfast just before getting my blood examn.

Saturation is 21%

My neurologist told me that Iron IV is rarely done in The Netherlands and has risks included, so it’s pretty much out of the question with this neurologist.

Any sleeping aids in particular you can recommend?