Pramipexole dosage

[Cynicgirl24]

I have had RLS for 8 years and my Pramipeole dosage has gradually increased from .125 mg to 1.0 mg. That’s really my first question. I take 4 tablets per day. Each one is .25 so total daily dosage is 1mg, correct? I ask because my sleep doctor said that I was at the high end of dosing pramipexole for RLS but some of the posts I have read seem to say people are taking much higher doses.

I take .25 at 4pm and .75 at 8 pm. I switched to splitting the medication into two doses because it seemed like I was experiencing symptoms earlier in the day.

I have read many posts about withdrawal and wondered how you knew when it was time to switch to another medicine.

[Madlegs1]

I don't know what site would advocate a higher dose than 0.25mg of Prami per day.That is the generally accepted highest dose for RLS patients. Parkinson's people might need a lot higher. Maybe that's where you got your information?

I suggest you check out a thing called " augmentation" - there will be links on this page .

Withdrawing from Prami is difficult, but entirely possible.

You need to go down Very slowly and by as small bits as possible.

Elffindoe has a good formula for reducing - if you ask him nicely, I'm sure he will give it free of charge!🤓💚

You need to be thinking( aka researching) what you will take after/ at later stages of reducing. Gabapentin or Lyrica are options.

Good luck.

[Elffindoe]

The dose you're taking is ABOVE the maximum recommended and whoever prescribed you this amount is irresponsible.

In addition whoever kept increasing the dose, presumably because it was failing has done the exact opposite of what should have been done.

This is SO common. You are yet another victim of doctors lack of knowledge of how to manage RLS.

Whoever prescfribed you this drug and increase it seems to have apparently failed to warn you about the major complications of taking pramipexole (pxl) and suggesting alternatives despite their legal and ethical obligation to do this.

I believe somebody in the UK has recently successfully sued a Dr for doing exactly this.

As Madlegs suggest, being on such a high dose or pxl and for years means that you now suffering from dopaminergic augmentation.

The treatment of augmentation is three fold

1) Have blood tests for serum iron, transferrin saturation, ferritin and haemoglobin.

IF these are all normal then if ferritin is less than 75 start taking an oral iron supplement.

Please read other posts for more datil on this. I have only just ten minutges agao commented about this to another member

healthunlocked.com/rlsuk/po...

2) Identify and if possible eliminate anything which may be making your RLS worse.

This includes alcohol, sugar, caffeine and other stimulants such as nicotine.

The wrost culprits are

Antidepressants

Sedating antihistamines ( neuroleptics, some anti-allergy meds,some cough meds, some sleeping aids and some anti-emetics

Dopamine antagonsist e.g some anti-emetics

Proton pump and H2 inhiobiotor antacids

and OTHERS

3) Wean off the pxl by slowly reducing the dose over at least 3 months and in your case possibly longer. Replace it with an alpha 2 delta liogand either gabapentin, pregabalin or gabapentin enacarbil. In order of effectiveness, but also cost.

You must not stop pxl suddenly, this is dangerous. It may also cause a condition called DAWS (dopamine agonist withdrawal syndrome) which is very serious and for which there is NO treatment.

Every time you reduce the dose of pxl you may experience withdrawal effects. These can be severe. The bigger the reduction the worse the withdrawals will be. These should settle within 2 weeks, but may last longer. The lower the dose of pxl gets the worse the withdrawals get at each reduction. They are at their worst when you finally stop it altogether.

My suggested schedule for weaning off pxl, free of charge is this.

The tablets you are currently taking are 0.25mg (= 180ug pxl)

You will need some 0.125mg tablets (= 88ug pxl)

You will need to cut some in half = 44ug

Reduce to 3 X 180ug tabs PLUS one 88ug tab PLUS one 44mg tab (a 88ug tab cut in half)

Stay on this dose for two weeks at least.

Reduce to 3 X 180ug tabs PLUS one 88ug tab

Stay on this dose for two weeks at least.

Reduce to 3 X 180ug tabs PLUS one 44ug (half) tab

Stay on this dose for two weeks at least.

Reduce to 3 X 180ug tabs

Stay on this dose for two weeks at least.

Reduce to 2 X 180ug tabs PLUS one 88ug tab PLUS one 44mg tab (a 88ug tab cut in half)

Stay on this dose for two weeks at least.

Reduce to 2 X 180ug tabs PLUS one 88ug tab

Stay on this dose for two weeks at least.

and so on, hope you can work it out.

If a reduction of 44mg is too much cut the tabs in 4 (= 22ug).

Forgive the use of micrograms (ug) instead of mg, the numbers get too complicated! I ope this doesn't confuse yiou.

You can start taking the alpha 2 delta ligand at any time, but no less than 4 weeks before stopping the pxl.

If withdrawals are very severe then ask your primary doc for a low potency opioid, codeine or tramadol and/or a benzodiazepine e.g. clonazepam.

Other alternative meds to help with withdrawsl are Kratom, cannabis, medicinal cannabis or a high THC CBD oil. CBD oil is likely to be the lkeast effective.

The legality of these is variable. Kratom is neither an approved food supplement nor an approved medicine.

You have augmentation the time to switch to another med is NOW!

see this link for further info

mayoclinicproceedings.org/a...

[Madlegs1 in reply to Elffindoe]

Thanks, Man!

[Joolsg]

I absolutely agree with Madlegs and Elffindoe. Another ignorant doctor over prescribing dopamine agonists and causing unnecessary suffering. You're in the US where there have been many class actions against drug companies manufacturing dopamine agonists.Dr. Winkelman has described increasing the dose of these drugs as 'pouring gasoline on the fire'.

Reduce very, very slowly and find a knowledgeable doctor who can guide you safely through withdrawal. The US RLS foundation costs $35 a year and will give you a list of doctors in your state. Read everything you can about augmentation and don't let them put you on Ropinirole or the Neupro patch as they cause the same issues.

[Eryl]

Drugs only treat the symptoms not the cause, so as Elffindoe has said investigate your diet to see if you're eating foods which are causing the RLS. Bread and wheat based foods could be a trigger becuse they have a high GI and also fruit juices which contain a lot of fructose and very little fibre.

[Sunrise56]

I was also on 1mg of pramipexole for many, many years. It was fine for a while but over time I needed more so finally I realized that I had to switch over to something else. I agree with the strategy of getting on Gabapentin or Lyrica (I take 500mg Lyrica which is on the high end but I need it) well before you start coming off the primipexole. I found that getting from 1mg to .5mg was relatively easy. Going down after that was increasingly hard. The last little bit was the worst. I needed Tramadol to be able to get through it and beyond. Pick your timing wisely because you may have some rough nights with little sleep. Make sure that your iron has been checked (see other posts for info) before starting the whole process.It’s all a bit tough but do-able. This place is good for information and support when you need it. Good luck to you!