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Restless Legs Syndrome

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Doctor you are fired!

Ballybofey26 profile image
6 Replies

I have been on pramipexole about 4 years ( i forget exactly) and the last year has been horrendous. I didnt know it was augmentation. so i have fired my doctor, and gone cold turkey now for 10 days without any meds. I dont trust doctors with this issue ( or my other blood vessel disorder). I dont want to go near one at all. My next step, now that my system is " clean" is to try a gluten free and sugar free diet. This is day one. Will keep you posted. Last night after 10 days detox was better. Even tho I woke up every half an hour hopping with restless feet, it was not shooting up my legs, breast , shoulders , arms and out the fingers _ which has been the norm for months now. So progress already. Let's see if a gluten and sugar free diet can alleviate my symptoms more. Will keep you posted.

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Ballybofey26
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6 Replies

I'm disappointed - I thought that heading was going to be finished by 'from a cannon'

Seriously though - you need to stop and reevaluate your plan. I get your impatience and your desire to move on and get out of pain but Cold Turkey from a drug such as Pramipexole - you run the risk of damaging your body.

You need to read up on augmentation and withdrawal from Pramipexole. It must be done slowly so as to make sure you progress rapidly - you go to fast and you risk setting yourself back months.

There are many here who have gone/are going through Pramipexole withdrawal and can advise you as to how best do it - it wont be long before Manerva comes along to give you some very good advice!

While you are reading on augmentation and withdrawal please also look into iron levels, yoga stretches and make sure you are not taking any other drugs that will exacerbate RLS, here is a good place to start:

rls-uk.org/treatment#:~:tex....

Hot baths and showers along with the stretching helped me immensely, I too am on a GF diet and have cut out sugar since last Monday, I have a very sweet tooth (only tooth as the rest have all fallen out due to the sweet tooth - pity it didn't fall out first :) ), but must do is a great master!

If it is safe for you, you can look into cannabis and Kratom. If in the UK you can seek medicinal cannabis via Project Twenty21 for conditions such as anxiety and pain so if you have issues like that with the RLS then that could be a route for you.

Best of luck and hope that helps a bit.

Take care.

I believe you have done very well to go cold turkey from pramipexole for 10 days now and sound so positive.

I'm not quite sure what to suggest you do now.

Normally, if anybody is considering withdrawing from pramipexole I would suggest they plan the withdrawal carefully beforehand.

The first thing is that it is dangerous to suddenly stop taking pramipexole, but I would imagine you are now past the main danger which could have occurred fairly quickly.

However, you are now at risk of severe withdrawal effects, which in some cases may last a few weeks, but in others, months. It's also possible that you are at risk of DAWS (Dopamine Agonist Withdrawal Syndrome).

The "usual" withdrawal effects of withdrawing from pramipexole are a worsening of RLS symptoms and sleeplessness. This can occur even if the dose of pramipexole is very low. I often read of people attempting to withdraw from pramipexole to give up the attempt because of withdrawals.

DAWS is significantly worse and can cause mental health problems such as anxiety, depression and suicide. It can last for months and in some cases people are completely unable to withdraw from the dopamine agonist. Luckily DAWS isn't so common, but it may be that sudden withdrawal, cold turkey, can trigger it.

The recommended way to withdraw from pramipexole is to slowly wean off it by reducing the dose in small steps over a relatively long period of time. This has been shown to significanlty reduce the experience of withdrawal effects and hence withdrawal is more likely to be successful.

I usually suggest, as a guide, what I did when weaning off pramipexole, i.e. I reduced it in steps of 44ug once every 4 weeks. This required cutting the smallest tablets in half.

These are identified as either 0.125mg (salt) or 0.088mg (base) and 0.088mg = 88ug.

I found that as I reduced the dose the augmentation faded, althlough some RLS symptoms persisted.

It took me 10months to stop taking pramipexole. In addition I also started taking another RLS medicine, gabapentin, before I started withdrawal.

Some people find taking an opiate helps relieve withdrawal effects and/or a hypnotic such as clonazepam or zopiclone to help with insomnia.

AS I say, I'm not sure what to suggest to you in your case.

I believe one option for you is to start taking the pramipexole again, but at a slighlty reduced dose. Then to slowly reduce the dose as I described.

Joolsg profile image
Joolsg

Wow that is brave. You actually sound like you’re doing quite well so I suggest you see how things go. Dr Early at Johns Hopkins makes his RLS patients go without meds after withdrawal from Ropinirole to see what the base level of their RLS is; he then considers appropriate meds.

Ensure serum ferritin is above 100 as you may find raising levels helps you.

If RLS continues to cause you sleepless nights you could consider asking for an iron infusion. If that doesn’t work there are other meds that can be useful like low dose opioids or Alpha2delta ligands.

Ranjits profile image
Ranjits

Please let me know I was trying to come off premipoxle three times but I failed I am taking 2 tablets 0.088 for 7-8 years I want to come off and to try different Rotigine patches I am desperate to come come off

3378Jasper profile image
3378Jasper

After about 10 years on pramipexole and augmentation I went cold turkey over a long weekend in 2018. I was already taking Gabapentin and I stepped it up to 4x300mg (a very high dose) for 3 weeks because I was going on holiday. After that I gradually reduced the Gabapentin and now take 2x300mg, which works for me.

As others have said it is worth checking the ferratin level.

Manerva is quite right about the dangers but I wouldn't suggest going back on Pramipexole if you can avoid it.

Well done and good luck.

Kathleenfrancis profile image
Kathleenfrancis

My doctor has put me on that,but it has made me feel anxious and depressed. So I have stopped it.i am trying magnesium.

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