Hi there ! I just joined this community and have RLS. I have been on Mirapex for already 15 years. I have extremely low ferritin levels. I have received iron infusions and it did raise the levels but they dropped back down after a couple of months. I see a doctor at a sleep med facility and I just started Gabepentin (sp?). I was told to stay on my normal dose of mirapex along with it for two weeks. Then I will try to decrease the mirapex.
I am glad I found this forum , life is tough with this nuisance condition.
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Hope61
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Hello, and welcome. I hope you find this community helpful.
I think you've done well to stay on pramipexole (mirapex) for 15 years! I suffered augmentation after about 4 years.
Are you changing because the mirapex is no longer working or is now actually making your RLS worse (augmentation)?
Just some tips you may find helpful.
When you reduce the dose of pramipexole you will experience withdrawal effects within 24 to 48 hours. These can be quite severe, may get worse for a couple of days and then fade and settle after 10 to 14 days.
The bigger the reduction you make, the greater the withdrawal effects might be. The tip then is to only reduce by a small amount, wait 2 weeks, then make the next reduction.
I suggest reductions of half a 0.125mg tab (44ug).
As the dose gets lower withdrawal effects may get worse especially when you finally stop altogether.
I made the last two reductions a quarter of a 0.125mg tab (22ug).
Some people really struggle at this stage and if you can a prescription an opiood like codeine or tramadol may help, if necessary.
It's a good idea to start taking the gabapentin anytime. Especially though at least 4 weeks before finally stopping pramipexole.
Gabapentin is generally thought not to be of much help with augmentation or withdrawal effects. It takes about 3 to 4 weeks before it takes full effect. It also depends on the dose.
A typical minimum effective dose is about 900mg. However it's really difficult to say how effective it's being until withdrawals have finished.
Note there is no fixed dose for gabapentin, the starting dose is 300mg a day. It's then increased until it's working. Because of the above, I suggest not exceeding 900mg until you've stopped the pramipexole. Then, if necessary you can increase the dose.
Only take gabapentin in the evening. Up to 600mg you can take it all at once 2 hours before bedtime. If more than 600mg, take (approx) 2/3 2 hours before bed and 1/3 2 hours before that.
At first it can make you drowsy, dizzy and make difficulty walking. One reason for only taking it at night. This should fade after a few weeks. The other reason is, for RLS you only really need it at night.
I don't know if you do, but if your ferritin is less than 75 then you could take an oral iron supplement. If it's between 76 and 100, another infusion may help.
However, although it's difficult to judge from what you've written, it does sound as if the infusion wasn't particularly successful.
Infusions are successful for up tp 60% of RLS sufferers, 20% only partial success and the rest, little effect.
Success means not having to take any medication.
The other thing is if there's a reason that your ferritin keeps dropping.
Thank you for all the info. My doctor wants me to switch meds because I am now having issues with the mirapex not work as well. Also she said Gabapentin is the drug of choice for RLS now.
My ferritin is 7. Believe it or not it's been lower. I've had a colonoscopy at 38 yrs old because they thought I was losing blood somewhere. I even went to John Hopkins RLS doctor who was a nut and did absolutely nothing.
I going to a hematologist in Sept. we will see what he says.
What side effects or withdrawals are you saying happen getting off mirapex ?
I agree with your doctor, if the mirapex is failing it seems best to stop it. Gabapentin is the recommended alternative.
If your ferritin were 10 times as much it would still be too low for RLS.
More signficanltly it is less than normal for anybody.
Do you have any other test results e.g. serum iron, transferrin saturation, haemoglobin?
Although it's possible you may be losing blood from somewhere e.g. the bowel. a) it may be that you're losing it from somewhere else. b) Itmay be that you're not absorbing sufficient.
Thank you! I want answers for sure. What symptoms did you have in regard to the withdrawal from mirapex ? Are you in the medical field or a person with RLS?
Withdrawal effects from dopamine agonists such as mirapex consist of a worsening of RLS symptoms. They increase in intensity and duration and sleeplessness can occur.
In extreme cases there can be mental health problems, anxiety, agitation and depression.
The very extreme is a condition known as Dopamine Agonist Withdrawal Syndrome (DAWS). This only usually occurs if you have suffered an Impulse Control Disorder from taking the drug.
You should assume that like me, members of this forum are only people who have RLS and that none are medics.
This applies even to members that were (or are) medics.
You will find members that know little about RLS except their personal experience, but there are some who are more knowledgeable. You don't have to be a medic to be knowledgeable and being a medic doesn't necessarily mean being knowledgeable about RLS.
I can only claim, for myself, that when I offer advice it is most often based on verifiable evidence and not just personal opinion.
I was on Mirapex for 20 years and over time had to slowly increase from .125mg to 2mg, thus augmentation had set in. My doc had me go off it cold turkey, then put me on the Neupro patch which works well and is not apt to cause augmentation. I get 3 months of it (90 patches) for $67 at the Amazon pharmacy.
Sorry I am late to respond. Your Transferrin Saturation Percentage is below 20% which makes you officially anemic and according to this sciencedirect.com/science/a...
You win an infusion. With a TSP of under 20% it will take at least a few years of a ferritin of 200 to get normal iron store status. I would personally fight extra hard for this, it will totally help with augmentation.
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How long off mirapex before moving on?
Hi! New here and pregnant. 
new here please help 
New here, but not to RLS
Hello. I’m new here. 
