Hi, I’ve begun tapering off my pramipexole after only being on it for 6 weeks, I was previously on ropinirole for about 6 years. After advice on here about augmentation I decided to come off the medication and see if I can manage it without. I have an appointment with a GP tomorrow and will be discussing getting my ferritin levels up, a recent blood test had them at 37.5ug/L.
I’m interested in people’s experiences of side effects when coming off this drug. This is the second night that I’ve had very little sleep and I’m wondering if it’s one of the symptoms. Thanks in advance everyone!
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You only started reducing Pramipexole 11 days ago so you have effectively stopped dopamine agonists cold turkey after 6 years.
We would never recommend anyone do that.
Dr Chris Earley at Johns Hopkins hospital is the only expert who recommends a fast3 week withdrawal. He says it will be hell whichever way you do it-so rip off the plaster/band aid.
And what you are experiencing is normal.
Yes. Zero sleep for 4 or 5 days. Severe, all over RLS. Violent body movements every 15 seconds. Severe anxiety & depression are also normal during withdrawal.That's what you can expect.
All set out in 'withdrawal schedule' on RLS-UK website under 'useful resources'.
With serum ferritin of 37, ideally you need an iron infusion to get levels up to above 200ųg/L. Oral pills will take a long time.
But you should be taking ferrous bisglycinate every other day.
Also, what meds has your GP prescribed for the severe withdrawals?
And has the GP started you on pregabalin or gabapentin?
The advice is to start a replacement med around 4 weeks before you stop Pramipexole.
Sorry, I realise I wasn’t very clear, I’ve reduced my dose by half a tablet over the last week. I’m not sure I’m that hardcore to come off it completely all at once!
I’ll read up on the withdrawal schedule, I want to be prepared for my chat tomorrow. Thanks for your advice!
Sorry! I hadn't realised you had just started the process.You can print off the withdrawal schedule and hand it to your GP. And the iron therapy page.Your GP will not know anything about RLS, or augmentation or that low brain iron is a major factor. RLS is not taught at UK medical school or at any stage in GP training.
But NHS and NICE guidance, although around 10 years out of date, DO mention raising serum ferritin above 75ųg/L. And NICE cks guidance does place gabapentin and pregabalin as joint first line treatment.
Ask for a low dose opioid. 30mg codeine, 50mg tramadol or 10mg oxycodone. You can take the opioid for 4 or 5 nights after each reduction in dose to settle the severe RLS.
If GP refuses- ask for an urgent referral to a sleep specialist/neurologist.
Hopefully your GP will read the information you hand over.
Definitely try to get an iron infusion to bring your very low ferritin up.
Meanwhile take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption.
Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.
Take it every other day preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.
If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours.
It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.
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