Does anyone know anything about Mirapex withdrawal?

[tagaxel]

I am tapering from Mirapex/pramipexole. I only had a few bad days after my first cut. I started at 0.5 mg. Then I dropped to 0.375 mg. When I droopped to 0.25 mg I started getting into real trouble – make that torture. Does anyone have any experience with tapering from Mirapex?

[Joolsg]

The vast majority will experience hellish withdrawal from dopamine agonists. There will be days with zero sleep and very, very intense all over RLS.Stick with it but go slowly. A minimum of 3 months is recommended by experts.

Start the replacement meds about 4 weeks before the last dose and make sure your serum ferritin is above at least 100.

Once through withdrawal, the RLS settles, becomes less severe and the new meds should take effect after about a month.

[tagaxel in reply to Joolsg]

Thank you. Have you ever heard od havin Mirapex compounded by a compounding pharmacist so you coule taper at lower doses?

[Joolsg in reply to tagaxel]

See Elffindoe's schedule below. The US RLS experts who recommend a minimum of 3 months are Drs Winkelman, Buchfuhrer & Ondo. If you're a member of rls.org you can access all the webinars that have been given by the top doctors.

[tagaxel in reply to Joolsg]

Can you tell me who the "experts" are that you mentioned? I have already started on Horizant because I went into "augmentation" on Mirapex And needed something to control the RLS while I tapered. But as I mentioned the taper is not manageable at this level.

[Joolsg in reply to tagaxel]

Withdrawal symptoms are horrendous and inevitably, there will be a period of around 2 - 3 weeks when you'll get little to no sleep and constant, unbearable RLS. Stick with it though as once off Mirapex, the intensity will settle.I used cannabis and low dose tramadol to help a little but it was still dreadful.

[Elffindoe]

You appear to be reducing the dose too fast.

I always recommend reducing in steps of 0.0625mg which is half a 0.125 tab.

Also don't reduce more often than once every two weeks.

The lower the dose, the worse the withdrawals get, so the last two reductions could be by 1/4 of a 0.125mg tab.

That's what I did.

[tagaxel in reply to Elffindoe]

That sounds like great advice but that 0.125 mg tablet is not scored therefore if you cut it in half you cannot be sure that you will be getting an even dose each time. I am however thinking about discovering whether the drug can be compounded and maybe I could take a lower dose that way. Thank you so much for suggesting something that was in the back of my mind.

[Madlegs1 in reply to tagaxel]

In case you were wondering, you have just been answered by one of the top experts on this site. ( Elffindoe).Listen to what he says very carefully.

The tablets can be cut with a good eye and very sharp knife.

It will be a long and painful journey, but the only sensible course of action open to you.

This question comes up on this site almost weekly.

If you wish to go back and look up previous posts, it will be well worth your time.

Good luck.

Also- pinned posts at bottom of page (phone)

[tagaxel in reply to Madlegs1]

Thanks, I’m new to this forum. I will take his advice. How can I find previous posts and what does this mean: “Also- pinned posts at bottom of page (phone)”

Also, how long and how painful?

[Madlegs1 in reply to tagaxel]

I use only a smartphone, so my information relates to that premise.Old posts are in order of times- just scroll down the page and they will appear.

You can also use the search icon at top of page and type the term you are looking for. Pramipexol, cutting tablets or whatever.

The pinned posts I refer to are threads that our esteemed administrator deems significant enough to warrant being highlighted or "pinned". They are at the bottom of the page. Along with another group of threads called "related posts"

You'll have to ask Kaarina the difference 😎. She's the nice lady who keeps all of us on our toes!!😎😰💚

Good night!

[Elffindoe in reply to tagaxel]

You need a very sharp knife and a magnifying glass. I didn't find it much of a problem.

If you break the tablet up into a powder, accuracy ix still a problem.

[tagaxel in reply to Elffindoe]

Thanks! Did you ever hear of anyone dissolving the pill in X milliliters of water? Or did you ever hear of anyone having the pill compounded by compounding pharmacist so that you could reduce even slower?

[Elffindoe in reply to tagaxel]

Hi, sorry, I never have

I'm not sure that the tablets are water soluble and I've never heard of a compounding pharmacist.

Think of it this way. If you cut a tablet in half and one "half" is slighty larger than the other, then if you take one half one night and the other half the next night then the "average" over the two nights is one half.

It's not that crucial.

[DicCarlson in reply to tagaxel]

I have seen that "titration" mentioned for anti depressants - dissolve the entire dose in a very accurate graduated beaker - then take 1/2 or 1/4 of the dose. Also many pill cutters on Amazon. You can probably get one in a large drug store. amazon.com/AVIDACE-Cutter-P...

[tagaxel in reply to DicCarlson]

That water solubility thing could turn a new page on withdrawing.! You could dissolve a 0.25 tablet in, let’s say, 100 mL of water and instead of removing 0.125 mg you could essentially remove just 0.0125 mg. Withdraw at 1/10 of the amount! People who withdraw from benzodiazepines after their nervous system has been kindled do what is called a micro taper. I'll see what else I can find on this.

As soon as I feel little bit better I’m going to work on the math.

[tagaxel in reply to Elffindoe]

No matter what, I am going to take your advice - I'll tell my sleep doc and show him your post - thank you so much for confirming my suspicions. My first cut was from 0.5 to 0.375 mg and I only had a few bad days but when I cut from 0.375 to 0.25 mg I started having these awful symptoms. Do you think the symptoms I'm having now will subside in a few weeks so I can cut by 0.03125mg bringing me to 0.34375?

[Elffindoe in reply to tagaxel]

It might be easier to think in terms of the number of 0.125mg tablets you're taking rather than doseages.

You mention reducing to 0.25mg which is TWO tabs.

But you also mention 0.375 which is THREE tabs.

Assuming you're currently taking THREE tabs then your first reduction could be to

TWO and a HALF tabs for 2 weeks

then

TWO tabs for 2 weeks

then

ONE and a HALF tabs for 2 weeks

then

ONE tab for 2 weeks

then

HALF a tab for 2 weeks

then

A QUARTER tab for 2 weeks

then

nothing.

OR if withdrawals are too severe you could at any time reduce by a QUARTER of a tab instead of a HALF.

Withdrawal effects may occur with each reductioin, but should settle within 10 days, hence the two week suggestion.

Withdrawal effects will be their very worst after stopping completely and may fade within 2 weeks. It can take longer.

Withdrawal effects usually consist of worsening symptoms, temporarily and sleeplessness. Some people experience some degree of anxiety, depression and possible panic attacks.

The replacement meds Jools refer to are what you're going to continue taking for your RLS once you've stopped the Mirapex. It's very unusual for anybody to totally manage without any meds at all after stopping Mirapex. That is unless some non-drug therapy works for you.

The standard recommended alternatives are either gabapentin or pregabalin. These do not work in the same way as Mirapex and they take some weeks to start working, so you shoulod start one some weks before stopping the Mirapex.

NOTE if you're offered either ropinirole or rotigotine instead of mirapex, these are NOT alternatives and they will cause you the same problems.

Anybody suffereing augmentation or newly diagnosed with RLS shpulod be offered blood test for serum iron, transferrin saturation (TSAT), ferritin and haemoglobin.

If any of these are low it could indicate iron deficiecy which would need treating.

If they're all normal, particularly if TSAT is LESS than 45% then you need to know the exact number for ferritin.

This is because for somebody with RLS it is recommended that the your ferritin is at least 100 and ideally over 200. (note that anything over 12 is considered "normal").

IF ferritin is less than 75, it's recommended that you start taking an oral iron supplement, the aim being to raise it to at least 100. If it's 76 or more, it's a different matter.

Please note it can take several months for iron therapy to take effect and it doesn't work for everybody, only up to 50 to 60%.

It is also recommended that you should identify and if possibloe eliminate anything thatg may be making your RLS worse. This is usually other medications such as antidepressants, sedating antihistamines( neuroleptics or in cough mneds, anti-allergy meds, sleeping aids and anti-emetics), dopamine antagonists e.g, some antiemetics, proton pump and H2 inhibitor antacids and many others.

There are three ways you can serach throiugh past and pinned posts about iroin and augmentation.

1) simply scroll backwards reading the titles of the posts (rather tedious!)

2) Use the "search" facility

3) Click on the "pinned" posts links.

The location of these depends on whether you're using a smartphone, tablet or PC/laptop.

On a phone the "Search" icon, a magnifying glass is at the top of the page. The pinned posts are at the bottom.

On PC/laptop the search facility is a box labelled "search HealthUnlocked" at the top right in the menu bar "My feed", "My Hub" etc

The pinned posts links are at the top right of the page. If you can't see, then scroll up.

Just to clarify

The "experts" Jools refers to are Medical doctors i.e. consultant neurologists or sleep specialists who treat RLS patients on a regular basis, who also carry out research, publish papers etc on RLS.

Madleg refers to me as an "expert", but I believe he means something else entirely. I'm not a doctor, have no patients and never carried out RLS research.

I have RLS and I read a lot!

[tagaxel in reply to Elffindoe]

Thank you so much. I only have the 0.25 tablets. They are scored so my first cut was to go from 2 pills to one and a half. I'll ask my sleep doctor for the 0.125 pills.

[Elffindoe in reply to tagaxel]

Yes it's easier with the smaller tablets.

[tagaxel in reply to Elffindoe]

Do you have any idea how long each episode lasts - this is my 12th day after my second cut and I am still suffering baddly.

[Elffindoe in reply to tagaxel]

Usually about two weeks, but it can be longer.

Again, that may depend on the size of the cut.

[tagaxel in reply to Elffindoe]

My first cut was from .5 down to .375 mg. Only a few bad days out of three weeks. My second cut was also 0.125 mg. I cut from 3.75 mg down to 0.25 mg. I have been miserable for 12 days. What do you think?

[Tobias10]

I had a new neurologist last who insisted on taking me off ig 1ng tablets z 6 daily cold turkey. I started serious withdrawal on day two and then spent 16 days of hell with severe muscle spasms and cramps, not one minute of sleep, sobbing, and having serious suicidal thoughts. A month later as she was adjusting my meds she put me back on it two tablets a day. I found a new doctor after that.

[tagaxel in reply to Tobias10]

Some of these doctors that I have their license pulled.

[tagaxel in reply to tagaxel]

I meant to say that they *should* have their license pulled.

[Boldgirl45]

I have a question about this. Let's say someone actually (somehow, miraculously) found the cause of their particular RLS - let's say it was ferritin levels and that in normal circs, they would be someone who would be lucky enough to completely eliminate RLS through supplementing with iron. What would happen to that individual if they were on a dopamine agonist? If all 'natural' reason behind the RLS were eliminated first (i.e the iron supplementation), would they still have awful RLS-like symptoms when withdrawing from the drugs?

[tagaxel in reply to Boldgirl45]

While I'm not chemist or a physician it seems clear that once your brain or nervous system gets used to an extra amountt of dopamine, once you remove that or attempt to remove that you're going to suffer the withdrawal symptoms which may or may not include increased movement in your legs. The hellacious withdrawal symptoms reminiscent of heroin or cocaine withdrawal I would think are independent of RLS.

[Boldgirl45 in reply to tagaxel]

Thanks Tagaxel, it's sort of what I was thinking, now that I know so much about these awful things. Thank you!

[Elffindoe in reply to Boldgirl45]

An interesting question. I can only guess at the answer.

Ideally if taking iron supplements then it's a good idea to keep a check on the ferritin level.

If somebody were taking a DA or ligand BEFORE starting on iron then you cannot possibly know to what extent the DA is relieving symptoms or the extent to which the iron is. In order to demonstrate how effective the iron is, you'd have to stop taking the DA or ligand.

If after totally withdrawing, symptoms disappear, then the iron has been totally successful.

If after totally withdrawing symptoms do not completely disappear then the iron has only been partially successful.

Be aware that for some people the iron doesn't work at all.

You will never really know until you've entirely withdrawn.

If the iron has worked then it doesn't necessarily mean that DA withdrawal symptoms will be affected either way.

However the overall picture seems quite complicated.

First it seems that it is a common myth that RLS is due to a lack of dopamine, but it isn't! The effect of low iron in particular leads to a lack of ADENOSINE and this leads to HIGH levels of presynaptic dopamine. The real problem is a lack of or downregulation of postsynaptic D2 receptor sites.

The lack may be a genetic pre-disposition.

High dopamine levels can lead to downregulation of the D2 sites.

DAs stimulate these postsynaptic receptor sites, initially. In time however, they can lead to further downregulation of D2 receptor sites and upregulation of D1 sites - this can lead to augmentation.

The effect of increasing iron levels will be to increase adenosine levels and this in turn will lead to LOWER dopamine levels.

If the DA is withdrawn it will still need time for the downregulated/upregulated sites to recover.

It would seem then that there may still be withdrawal symptoms.

The situation where you were taking an alpha 2 delta ligand before starting iron would be different. This is because the ligands do not affect the dopamine D2/D1 receptor sites. I imagine this is why the risk of augmentation is much lower.

In this situation low iron and low ADENOSINE leads to HIGH levels of glutamate. The ligands counteract the excess glutamate.

In this case raising iron and hence raising adenosine will lead to lower levels of glutamate. I imagine then that this would mean that ligand withdrawal effects may be lessened.

THIS is ONLY my interpretation.

It's based on this

ars.els-cdn.com/content/ima...

[Boldgirl45 in reply to Elffindoe]

Thank you Elffindoe for the inciteful thoughts. Not something we could ever find the answer to, but good to muse about it!