Pramipexole

[Smurff]

Can anyone tell me the max dose of pramipexole a severe risk suffer can take I am taking 3 morning 3 evening total Pramipexole 180microgram 6 times day ! One of my GPS thought I was on to much but on checking he found although it was to higher dose for Parkinson it was OK for RLS ! My predicament is , I am presently in hospital and have been told I am on to high a dose OMG I don't care as long as it gives me relief , are they correct ?

[Madlegs1]

The max guideline dose for Pramipexol for RLS is 0.25mg per day. (3 tablets of 0.088mg ) It would be a lot higher for Parkinson's patients.The higher the dose, the greater the risk of getting augmentation.

You do NOT want that.

Why are you taking them through the day?

If you have rls symptoms all day, then that is a very strong indication you already have augmentation.

It could also be that you are on triggering medicines- such as antihistamines, antidepressants etc.

Get your serum ferritin levels checked. They should be at least 100.

Good luck.

I think you will need it!😎

[Smurff in reply to Madlegs1]

Firstly what I augmentation ? I take 3 in morning and 3 evening , that was what was instructed by gp ! If I didn't take in evening I would be up all night , if I didn't take in morning by midday or afternoon I would be foot and leg shuffling , do people only take these as and when needed or what , I have only joined a short while and already I have learnt so much , but it's frightening the number of medical professionals who are blind to this condition, imagine lying in a hospital bed with your legs going ten to the dozen and being told relax !

Arrrgh its torture just to think about it

[Madlegs1 in reply to Smurff]

You are suffering from augmentation.Please read up on it. Use the search icon on this page, or check out posts marked at the bottom of the page.

Do all the research you can .

Oh--- and get a new doctor who is literate.

The recommendation of Prami for RLS is a fraction of what is allowed for Parkinson's. Not the other way round.

You actually have grounds for legal action according to your description of his treatment.

[Anninvest]

Hi Smurff,My wife used to take 1 mg for many years, then 2 mg. She has severe RLS. She is taking it only at bedtime. Now it started the augmentation, so she will see a Neurologist specialized in RLS in January. She also takes 3 mg of Clonazepam and 3 tablets of Tylenol 3 (one tablet contains 300 mg of Acetaminophen (Paracetamol) and 30 mg of Codeine.

I keep reading about people in UK going to their General Practitioner for RLS. In US no doctor knows anything about RLS, we have to go to Neurologists for that.

[Madlegs1 in reply to Anninvest]

There are a serious number of supposedly knowledgeable neurologists out there who are actually dangerous with what advice they give for RLS treatment.Letters after ones' name is no guarantee of intelligence.

[Anninvest in reply to Madlegs1]

You are absolutely right. I was just wonder why in UK people could go to GP for RLS and in the US the GPs have no idea of RLS.

[Retiredlady in reply to Anninvest]

I live in Australia and majority of gps are also ignorant about RLS.!

[Pippins2]

Hi if you click on posts at the top of the page ,then onto pinned posts it will bring up explanations of augmentation

[Madlegs1 in reply to Pippins2]

Is it the same for phones as for computers?I only use my phone-- never on laptop.

[Pippins2 in reply to Madlegs1]

Not sure I only use phone too !

[involuntarydancer]

Hi Smurff and welcome. Unfortunately, the GP who prescribed your pramipexole (mirapex) has done you a grave disservice and you face a difficult process sorting out your rls treatment.

Are you still in hospital? You need to get through that first before addressing the medication. A reduction in mirapex will result in very increased rls symptoms and you shouldn’t have to deal with that while in hospital.

What size mirapex tablets are you taking? What mg do they say they contain? How long have you been taking this dose? Did you have rls during the day before you started mirapex?

Madlegs’ advice is spot on. You should get your iron levels checked (make sure to get the actual figure).

Read up on augmentation as suggested by all the others. With this condition you need to have all the information yourself. It’s safer to expect that your medical professionals won’t know much about it (though often they won’t admit this). They may do actual harm with mistreatment and you won’t realize unless you have learned about the treatments yourself.

Most regular posters on here know more about rls than the vast majority of medical professionals.

[Smurff in reply to involuntarydancer]

I am absolutly terrified now , as admitted to hosp yesterday with heart problems gave all my meds list as I have a Doset box , after noting that I was on a very high dose of pramipexol they did not give me any for my evening drug dish out however I still have my Doset box with me so had to take my own without them knowing , how the he'll am I gonna get through a night in a hospital bed with my legs going nuts , I truly am terrified , why are you taking such a high dose they said ! For goodness sake I am only told to take what drugs my gp prescribes ! Do you think I go down to boots n buy em Willy nilly , if I am on to high a dose and caused augmention can I use the gp as he has sent me on a road to self destruction and torture , thank heavens for this site

[involuntarydancer in reply to Smurff]

You are in a dreadful situation. What your GP did is disgraceful but what the hospital is doing in removing the mirapex completely is even worse. The suffering that would induce (if you hadn’t had your own supply) doesn’t bear thinking about. You will have to spell out to them that it is essential that any withdrawal from pramipexole be conducted very very gradually. You just can’t stop it like that. You will not sleep at all for weeks.

In your shoes, I would not start reducing pramipexole until after leaving hospital. Then you will have to do it very gradually. You will need the help of an opioid to enable you to get some sleep while withdrawing and when you have the pramipexole washed out of your system you can attempt to get a different form of treatment.

Re suing your GP, it can be difficult to bring home a legal claim but the size of the dose and the fact that he/she has you on it twice a day really does seem to be negligent if not reckless - in a legal sense.

[Smurff in reply to involuntarydancer]

Thank you

[involuntarydancer]

Whatever you do, do not make any sudden reductions in the mirapex dose. It is a drug that needs to be reduced VERY gradually.

[Freegaza786]

Smurff after reading the above thread I had to reply.

As others have said above, your GP has put you in a very bad place in regards to RLS.

First and foremost what is paramount is your stay at hospital.

And thank god for your own supply. Coming off DA (Pramipexole) some have compared it to heroin withdrawal. TELL THE DOCTORS AT THE HOSPITAL THAT.

They may not have much knowledge about RLS, but surely they have knowledge about medication and withdrawals. I feel like coming up to the hospital you are at and giving Them a piece of my mind.

How can this be allowed to happen.

Do not suddenly stop the DA, it is dangerous. (I’m talking from experience as I went cold turkey). Get through your stay at hospital, and do a lot of research into RLS. Read posts on this forum about augmentation, iron levels. Theres a lot to take in.

You will find once you research about this conditions yourself, you will be better equipped moving forward. And no doubt in my mind, with what your GP has done you will think about suing them.

Wishing you all the best

[involuntarydancer in reply to Freegaza786]

Re heroin withdrawal, I understand that most users say that the reason they fail in their attempts to discontinue is that they cannot cope with the rls symptoms that emerge during withdrawals. Read any thread on reddit about withdrawal and you’ll see it discussed.

I have experienced withdrawal from mirapex and - separately - from OxyContin (I was taking a strong dose for my rls). Withdrawing from oxy was awful but it was nowhere near as bad as withdrawing from mirapex which I did too rapidly.

[Freegaza786 in reply to involuntarydancer]

involuntarydancer i mention heroin withdrawal as others have compared it to that. And it is easier for healthcare professionals to understand the severity when you mention the above. Not that you should have too. But in my own experience, it gives them a wake up to reality of what DA’s are.

I come off Ropinrole cold turkey (due to misinformation, and would never advise it) and yes it did amplify my symptoms. Unbearable, don’t know how I got through them weeks. So you are right.

Wishing you all the best

[Smurff in reply to involuntarydancer]

Thank you so much ! If only one member of staff suffers from RLS then they would understand

[Smurff in reply to Freegaza786]

Thank you so much

[Smurff in reply to Freegaza786]

Thank 4 so much

[SueJohnson]

Refer the hospital to the Mayo Clinic Updated guidelines on RLS at Https://mayoclinicproceedings.org/a... where it says "Higher doses of dopamine agonists should never be discontinued abruptly as serious withdrawal effects can occur, characterized by severe RLS, sleep disturbance, and depression. Rates of reduction should not exceed 0.25 mg (pramipexole)"

Maximum daily dose for pramipexole is 0.5 mg .

[Nana2010]

Are you able in the UK to request a neurologist come onboard to help with your RLS? And before you do, do some research on which neurotoligist in your area specializes in RLS. Prayers for you!!

[Smurff in reply to Nana2010]

Thank you for your concern

[Clarence1936]

I am 85 yrs old I have been taking Pram. for at least 15 years. I took 12 every day . I got a new doctor that thought it was causing some of my problems and I reduced the number (over time) I take 1 now and it works fine. Many doctors don't really know what they are doing and will tell you to take anything that they have heard of. Some work for a short period of time on the RLS but you pay heavily any many bad reactions. I now take

1 Pram .5mg for RLS. Its not perfect but I get by and don't have the other problems.