I have had RLS for 40years

[welschrisby]

I have tried most medications. I am currently taking 6mg of Pramipexole at bedtime and I am rarely completely spasum free I have spasums in my arms as well as my legs and on the very rare occasion I have run out I suffered the most unbearable agonies. I am now 72 years old and I am afraid for my life. My condition is deteriorating and i don;t know what to do. My doctor wants me to try a patch, I forget the name but he says i Have to cut the pramipexole dose in half before I apply a patch. I know that this is not possible and i asked if I should use tramadol as i have before. He said the risk is too large. I also have COPD and sleep Apnea. What do you think? Is there any point doing a total supervised de tox and use something like Methodone? Do I have any options at all? The symptoms are so bd it's like being buried alive in a small casket. I want to move but I have six feet of rock and soil above me and no one knows I am alive so help will ever come.

[LotteM]

So sorry to read, but all too recognisable. And are you sure about the 6mg pramipexole? That is 8x the recommended maximum for its use for RLS. That is negligence on your doctors part.

Also, wanting to switch you to te patch (probably rotigotine, brand name Neupro) is an out of date reaction. You are clearly suffering augmentation and switching to another dopamine agonist will only extend the problem.

Your doctor is only half right about the risk of induced or increased apnea by painkillers or opioids. Opioids have a -small- risk of central sleep apnea, which is a neurological thing. Most people however suffer from obstructive sleep apnea, which has a mechanical cause. So yes, your doctor may be right to be cautious. But do make sure you have a good discussion about it and ask about all aspects and considerations of your current medicines and effective alternative given your RLS symptoms. I assume they are severe.

Have you considered gabapentin or pregabalin? Or Horizant when you are in the US. They are currently the first pine of medicines for RLS. They takes several weeks to become effective, and doses need to be built up somewhat slowly.

Please spend some time reading other posts and replies on this forum, starting with the pinned posts about augmentation.

And if you have questions, need to moan or rant or want advice: you are very welcome. Very knowledgeable people here.

[Hidden]

Hello and sorry to hear of your situation.

Firstly just to clarify, the maximum dose of pramipexole for RLS is 0.75mg, i.e. less than 1 (one) milligram. If you really are taking 6mg this is 8 times the maximum and any doctor prescribing this amount is totally irresponsible.

Secondly, it seems that your doctor has no understanding of RLS or what's happening in your case.

Pramipexole is from a class of drugs known as dopamine agonists (DAs). It is well accepted now that these drugs can lead to a condition known as "augmentation". This is very very common and can happen with even small doses but is more likely to happen the higher the dose you take and the longer you take it.

For this reason, DAs are no longer recommended for RLS.

From your description of your symptoms, it appears that you are certainly suffering from augmentation and this is caused by the pramipexole.

To emphasise that point it's the pramipexole that's causing your current situation and the best treatment for it is to stop taking the pramipexole. OR any other DA.

Your doctor is proposing to prescribe the "neupro" patch which contains rotigotine. This is really not advisable as this is also another DA, as is ropinirole.

Even if switching to the patch helped at first, it wouldn't be long before you would be experiencing augmentation yet again.

It's difficult to decide what would be tbhe best medicine to switch you to.

Opioids can be used for RLS. Unfortunately, as you suffer COPD this may be a bit of a problem as opipoids can cause respiratory depression. If your sleep apnoea is obstructive rather than central then this doesn't offer the same problem.

The standard alternative to the DAs are an alpha 2 delta ligand, pregabalin or gabapentin. Unfortunately these two can cause respiratory depression of you have COPD, but NOT obstructive sleep apnoea.

You could still take an opioid or an alpha 2 delta ligand, but your doctor would have to monitor this and you couldn't take both together.

As well as withdrawing from all DAs your doctor should do blood tests for ferritin and haemoglobin. If your haemoglobin is low - iron deficiency anaemia then this will be making your augmentation worse. Even if it isn't low then if your ferritin is below 75ug/L you may benefit from taking an oral iron supplement. Iron deficiency is a major causative factor in RLS.

Furthermore if you're taking any other medicines for any other condition, they could be making your RLS worse.

Your main problem remains that you are clearly suffering augmentation caused by pramipexole, a DA. The neupropathc, rotigotine, another DA also causes augmentation.

Even if you did nothing else such as taking an opioid or an aplgha 2 delta ligand then the augmentation can be significantly improved by reducing the pramipexole with a view to perhaps stopping it altogether.

Whatever you doctor tell you. pramipexole should never be stopped suddenly and when it is reduced it needs to be reduced very slowly to avoid withdrawla effects which can be very severe. A typical regime for reducing it is to to reduce it in steps of half a 0.125mg tablet every 2 to 4 weeks. This can be varied, but it could take you nearly two years to reduce from a dose of 6mg.

If you accept what your doctor says, i,e that you would have to reduce the pramipexole by a half (3mg) before switching to a neupro patch, then you would have to switch to an equivalent dose of the patch which would be 8mg. This would be twice the maximum dose of the patch so is still too much and augmentation would possibly continue.

Obetrall, if it's true you are taking 6mg pramipexole then whoever has prescribed you that bhoght a dose has acted unethically and has caused you harm. Switching to 8mg neupro would be equally unethical.

If you live in the UK you may find these links helpful

cks.nice.org.uk/topics/rest...

cks.nice.org.uk/topics/rest...

[Joolsg]

I am so sorry to hear of how badly you’ve been treated by your doctors. As Manerva advises, that dose of pramipexole is negligent. You may want to consider an official complaint. The reason you’re suffering so much is because the dose is so high and you’re suffering the most common side effect - augmentation.Please follow the advice Manerva has given you and if you are in the UK, consider switching GPs.

If you’re in the US, we can perhaps point you towards a doctor who knows about RLS and augmentation and can get you safely through withdrawal from pramipexole.

[welschrisby in reply to Joolsg]

Thank you Jooisg and everyone for these detailed and caring responses. I will indeed follow the advice given and have already returned the prescription. It was a shock to find out about the over dosing but it feels better to have some good useful information I can act upon. I am in fact an ex pat Brit but I live in BC Canada. How interesting it is that my advice is coming from the UK on the same day that the UK based Covid vaccine arrived in Canada! Your offer of finding me a RLS savvy doctor is generous and I would be so relieved if you could.The nearest big cities are Vancouver and Victoria but the closest city is Nanaimo on Vancouver island. If it helps at all my postal code is V0R 1X3. I can travel if necessary but thought I might be lucky enough to find someone nearby. Thank you.

[Joolsg in reply to welschrisby]

Hi welschrisby,

I don’t have a doctor’s name for Canada but I do have an email for a support group near you & hopefully they can give you a recommendation.

[e-mail]

The RLS foundation in the USA has a lot of helpful info & support & costs $35 a year for Americans & Canadians. I am a member (although in England) & some of the webinars with the top experts are excellent.

If you don’t get a recommendation from the Canadian support group- it’s still possible to get off these poisonous drugs alone. I did it in 2016 with the help of the knowledgeable people on here and am so glad I did. I learned how little doctors know about the disease and the medications. My doctor treated me badly & clearly had no idea what augmentation was or how traumatic withdrawal from these meds can be.

I slowly reduced ( but wish I had gone more slowly ) with the help of tramadol 50mg every 4 hours during the last 2 weeks withdrawal & illegal cannabis. I also raised my serum ferritin by taking ferrous bisglycinate every other night.

I wish you every success in getting off pramipexole and taking back control- knowledge is power.

[joesephzzzz]

Sorry to hear it...my neurologist put me on 4 mgs of clonazepam

200 mgs of limictal

50 mgs of Norco

15 mgs of valium

I added Kratom Busy Bee

Near infrared and red light therapy

And at Night I smoke medicianal marijuana...

I have been doing this for like 6 years...

When the meds quit working and the pain gets up to like a 10

I turn on the Red Rush box light place the calves on it for like 20 minutes

and the pain goes to zero...sleep like a 250 baby...without the light I would

be on methadone...

[Sleepylamb in reply to joesephzzzz]

I would love to hear more about the red rush light box? That sounds like a great alternative.

[Ranjits]

I was on premipoxle for 8 years I am 70 came off from premipoxle now I am on Rotingine patch’s nearly two months 1 mg patch is not helping me I was so desperate I took last night I took two tablets of Gabapantin had a good sleep don’t know what to do