I have been on the max dose of pramipexole for 15 yrs . I am also taking proclorperazine and oxybutynin all of which (I have read) can contribute to early onset Alzheimer’s
Does anyone have any experience of this or had had success with changing rls and/or musculoskeletal prescriptions
Thanks
Hello and welcome to this forum. I hope you find it helpful.
The UK "official" max dose of pramipexole is 0.75mg, so I assume that's what you're taking.
If you've been taking pramipexole for 15 years without complication you are a rare person indeed!
The majority of people who take it or one of the other dopamine agonists i.e. ropinirole or rotigotine usually suffer severe complications after less than ten years. You have done well.
The most common complication is a condition known as "augmentation" which is a significant worsening of RLS caused by the drug, If this occurs, then the recommended treatment is to stop taking the drug.
A less common complication is Impulse Control Disorder (ICD). The treatment for this is again, to stop taking the drug.
For these reasons, early onset alzheimers may not be a cocnern for anybody taking pramipexole because most people have to stop taking it after a few years.
It is advisable to stop taking it, not just because of any risk of dementia but also because of the risks I mention above.
However, it is very difficult to stop taking pramipexole as I'll elaborate on later.
As regards the prochlorperazine and oxybutynin. If you want to stop these, it may be possible to find alternatives. You'd best discuss this with your doctor.
As these aren't for RLS, I know little about them. However, I do know that prochlorperazine can make RLS worse. Hence if you were to stop that, you wouldn't need as much RLS medication.
You didn’t elaborate on why it’s difficult to stop taking pramipexole?
I'm doing that now 
I can only write about stopping pramipexole and switching to another RLS medication.
Firstly, you cannot stop taking it suddenly this is very dangerous.
Secondly, although not exactly classed as addictive it is highly dependency producing and hence extremely difficult to wean off because of the possibility of severe withdrawal effects. Anybody who has developed an ICD because of taking it, is considerably at risk of a condition known as DAWS, (Dopamine Agonist Withdrawal Syndrome).
To reduce the severity of withdrawal effects it's necessary to lower the dose gradually over a relatively long period of time. To wean completely off pramipexole may take between 5 and 10 months. It took me 10 months.
A suggested schedule is to lower the dose in steps of 0.0625 mg (half a 0.125mg tablet) every 4 weeks. When you reduce the dose, it may cause withdrawal effects i.e a temporary worsening of RLS symptoms and sleeplessness. If these effects settle in less than 4 weeks, then you can make the next reduction. If not, wait 4 weeks.
As the dose gets lower, the withdrawal effects after each reduction may get worse. Hence it make take longer.
Do you know if all of the replacement medications are musculoskeletal in nature ?
I’ve been told that it is the huge amounts of musculoskeletals I am and have been taking over the years is what might make me susceptible to early onset Alzheimer’s
NONE of the medications used for RLS i.e. dopamine agonists, alpha 2 delta ligands or opiates are "musculoskeletal". They all act on the c entral nervous system.
If somebody told you pramipexole is "musculoskeletal" this is incorrect.
Prochlorperazine is the same, it is NOT musculoskeletal.
There are alternative medications for RLS.
The standard ones are called alpha 2 delta ligands. This is either gabapentin or pregabalin. These do not have the same risks as the dopamine agonists, but they do have side effects and risks. However, they are considered as being preferable to the doapmine agonists and in fact, dopamine agonmiusts e.g. pramipexole are no longer recommended as the first treatment of for RLS.
These can be started before pramipexole is stopped and this is recommended as they take a few weeks to start working. It also takes a bit more trial and error to get the dose right.
The other alternative medications for RLS when adopamine agonists have failed is an opiate. GPs may be willing to prescribe codeine or tramadol for RLS. Masnby GPs however won't. In addition. they're not ideal for RLS.
Targinact, a combination of oxycodone and naloxone is licensed for RLS in the UK. However, only a specialist consultant can prescribe this e.g. a neurologist.
If you read some othere posts on here you will see that some folks have been successful on getting a prescription of temgesic for RLS. This is a low dose opiate, buprenorphine, which has been shown to be ver6 effective for RLS and if started whilst reducing pramipexole can control withdrawal effects.
Mind you, drugs which act on the central nervous system are more likely to affect the brain.
Oxybutinin also isn't musculoskeletal. Musculoskeletal drugs will act on skeletal or voluntary muscles i.e. the ones you use to move. Oxybutinin doesn't do this. It acts on "smooth" muscle. e.g, muscle in the bowel or bladder.
Yes my fault I got my information confused
I think the concern is that as well as the dopamine agonists I take I am also taking musculoskeletal meds and oxybutinin
All of which can cause Early onset dementia
I don't know if there is a class of medicines known as musculoskeletal.
There is a variety of medicines used for musculoskeletal conditions, but they all come from different classes of drugs.
This includes NSAIDs, steroids and even gabapentin. However, as an example, although gabapentin can be used to treat musculoskeletal pain, it does this by desensitising nerves. NSAIDs work differently, i.e. by reducing inflammation.
It may be true then that some drugs used for musculoskeletal conditions might contribute to early dementia, not all of them will.
What are you taking?
There is some evidence that gabapentin improves dementia!
I saw a neurologist who told me that long term use of pramipexole itself causes alzheimer's symptoms. Not to mention all the other terrible side effects.
I’ve heard the same hence my concern
I don’t feel at all lucky to have been on pramipexole for 15 yrs especially as the Alzheimer’s concern was not told to me when I began taking them
It's unfortunately quite common for doctors to fail to warn you of the complications of particular treatments. Strictly speaking, this is illegal, as well as unethical.
The most common serious complication of pramipexole is augmentation. It's also been suggested that pramipexole can cause permanent damage to brain cells, but not such damage thst leads to dementia.
I can find no evidence that dopamine agonists can lead to dementia. I have found some sources that say rotigotine can improve cognitive function in people with mild dementia.
There is evidence that dementia is associated with LOW levels of dopamine whereas dopamine agonists increase dopamine levels.
There is some evidence that "anticholinergic" drugs which were once used for parkinson's disease can contribute to dementia. However, these are no longer used for parkinsons and never for RLS.
I would still suggest you consider withdrawing the pramipexole, this is however because of the risk of augmentation.
My guess is they didnt know anything about augmentation untill the last few years. Someone correct me if that is wrong. I just had a physical with a new family dr. I asked him if he knew much about RLS. He stated he did. I told him I will be seeing my neurologist again soon to try one more time to get off of pramipexole. He didnt seem to understand why it was so important to go off this medicine. I than asked him if he had ever heard of augmentaion with pramipexole. He stated he was not familiar with it. I asked him to please research that and he would understand than. I wont get into it here but my neurologist has failed me 7 months ago when i he tried to help me get off of pramipexole. He told me my neuro symptoms were related to that medicine. He never mentioned augmentation or any of the problems i would have getting off of it. I was on it for 12years eventually at parkinsons levels as I needed to increase more over the years. No dr told me there was any problems at all. For some reason word is still not getting out about the disaterous long term results of using this drug for RLS.
This is a similar pattern to what everyone over here has experienced. It is so sad. Even worse is that when you try to tell them doctors about it, they don't give any thought to it.
They knew about augmentation over 10 years ago BUT the drugs companies kept quiet- they simply put a small section in the meds leaflets to avoid legal action.
Neurologists & doctors don’t know much about RLS or augmentation so no surprise that your doctors put you on High doses. Hopefully you managed to get off the pramipexole safely.
My attempt to go off it 7 months ago was basically a disaster. I was basically given 1 week to wean off it and started with gabapentin. I did 3 weeks of absolute hell. I didnt bother to go back to the dr at that time. I just restarted the pramipexole at a much smaller dosage and it stabalized everything but I have already started to increase the dosages to keep it working again. I will see him next month and will talk to him about tapering off for a much longer time and using an opioid to help.
Manerva has posted about pramipexole and the best way to reduce. Minimum time is 3 months.
He has posted all the links about NHS & NICE guidelines. Read all his recent posts & you’ll see that your doctor is clearly in breach of guidance & has behaved dangerously & negligently.
Perhaps you should set out your concerns in writing & ask to see another GP & ask for a referral to a neurologist to discuss a SAFE withdrawal method and alternative meds.
Personally, unless proven to be wrong, I wouldn't put much trust in any particular doctor, GP or neurologist to help wean off pramipexole.
I did it successfully without any medical help. I may however be unusually lucky.
You will need medical help however, because of prescriptions.
You will need a continuing prescription for 0.125mg pramipexole tablets.
If you choose to replace it with an alpha 2 delta ligand, then pregabalin may be better than gabapentin. Note it takes an adequate dose and 3 - 4 weeks to work. It won't be fully effective whilst you're still suffering augmentation or withdrawal effects from pramipexole. However, you can take it at the same time.
I weaned off pramipexole by reducing it in steps of half a 0.125mg tab every 4 weeks In the final stage I reduced from half a tab to a quarter tab for a few weeks before stopping.
If withdrawals are severe then opiate can help. This may be a difficulty, i.e. in getting a prescription.
I managed without, but I may have been lucky.
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