Pramipexole

[Edward567]

it’s not possible to manage without taking pramipexole, as much as I don’t like taking tablets.

[SueJohnson]

Is it that you don't like taking any medicine, or that you don't like taking pramipexole? How much are you taking?

[Edward567 in reply to SueJohnson]

I’m taking 4 pramipexole per day and they work.

[SueJohnson in reply to Edward567]

How much in each tablet?

[Edward567 in reply to SueJohnson]

0.088mg per tablet

[SueJohnson]

I'm glad they work for you - just be aware of the signs of augmentation. Have you had your ferritin tested?

[Edward567 in reply to SueJohnson]

Yes Sue, I see a Consultant every 3 months for haemachromatosis.

[Joolsg in reply to Edward567]

I agree with Sue. Pramipexole causes severe worsening of RLS symptoms in over 80% of patients. The figure is probably higher because most people think it's normal for RLS to become more severe and don't realise it's the Pramipexole causing it.So if you have RLS symptoms every day, the RLS is starting earlier in the evening or has moved to arms, hands or trunk, it's time to visit the doctor to discuss a safe, monitored withdrawal and alternative meds like Pregabalin, gabapentin or low dose opioids.

[Inkosikazi]

And watch out for the weird side effects, like compulsive behavior. I repeatedly ended up in a casino.

[Kayakcarole]

I agree that Pramipexole leads to a worsening outcome for most. I advise all RLS sufferers that I meet to strongly think about stopping it or not starting it altogether. My dad was on high amounts his entire life ( with a physician who kept advising him to double it when it no longer worked as well) . He developed serious gambling addiction and died penniless from his daily casino visits as well as having terrible RLS that never was under control.

I was on it for years, even low doses, but stopped when I noticed how much worse I was getting. I now control my nighttime symptoms with 2500 mg Delta 8 tincture (1/2 dropper) for insomnia, 2.5 mg Low dose naltrexone, 5 mg CBD/thc gummy (also for insomnia) and 600 mg Gabapentin. I smoke cannabis from a vape pipe in the middle of the night as needed which stops the leg jerks almost immediately. Cannabis resets the dopamine receptors quite well. I hesitate to increase the Gabapentin since that is what is causing sleep disturbances and the severe insomnia. I welcome any further suggestions or comments. My ferritin is about 90.

[SueJohnson in reply to Kayakcarole]

You might want to try switching to pregabalin. Although they are basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose.

[SueJohnson in reply to Kayakcarole]

Also are you taking iron or planning on getting an iron infusion to raise your ferritin above 100?

[Edward567]

Sue, I have haemachromatosis so I have too much iron yet RLS is caused by not enough iron! So I really have a problem- certainly contradicting. I would like a consultant to explain why this is. My iron level is stable but slightly anaemic.

[Wavy67]

I also have haemachromatosis. Doctors suspect some other underlying cause but have not found strong enough indications of any. I also am on 4x 0.88mg pramipexole, which appears to do enough, but I am now experiencing a cold burning sensation in my toes (and a lot of achillies pain which is related to walking a new energetic puppy)Not sure if I am worried about the toes yet.

[Edward567 in reply to Wavy67]

Hi! I am taking the same 4 pramipexole AND just after taking them each day I have a hot big toe! But only for about an hour. So we must be normal! So good to hear someone has same side effect as I thought it was the ‘borderline diabetes ‘

[Wavy67 in reply to Edward567]

My GP has always had potential Parkinsons in the back of his mind, but the Consultant disagrees. I was wondering if the toes were a progressive symptom I needed to take action on. So pleased to hear this is medication related.