I lasted posted 7/6/20 asking for advice on pramipexole and augmentation, was advised to stop and given advice on how to stop slowly, which I have followed and am now down to my last month at 0.30, it’s not been easy and I still have lots of sleepless night but hoping that thing will improve once I am totally drug free, I was also on Prozac which I stopped in August 20.
I brought a online iron/ferritin blood test, results ferritin 58ug/L range 13-150, iron 22.7 umol/L range 6.6-26.0, which states normal but I know not so for RLS , I purchased from Holland & Barrett iron with vitamin C, vit C 60mg and iron 14mg also brought magnesium 250mg, could I please ask when and how to take these, if all, ie time of day or should I wait until I have stopped pramipexole altogether.
This site has been a lifeline and I have spent many nights reading posts until early morning.
Thank you
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Hi, I'm afraid I'm a little confused by the dose of 0.3 you mention. I'm not aware there's any way of taking such a dose. Is this 0.3 miiligrams and is it an immeditae release pramipexole or an extended release? The dose between these two differ, but I still can't see how you get 0.3mg for either of them.
If the dose you're currently taking really is 0.3mg and you're intending to stop it entirely in a month this seems a bit too fast to me and runs the risk of increasing withdrawal effects.
Sleepless nights is a typical withdrawal effect.
Once you are entirely free of RLS drugs and withdrawal effects have settled, then your RLS symptoms will probably settle to how they were before you first started taking any medication for RLS. Since pramipexole is also thought to cause some permanent damgage and also depending on how long you were taking it for, your symptoms may be worse than before. In which case you may have to consider taking an alternative RLS medication.
The "normal" ferritin range does not really apply to people with RLS. Ferritin levels for people with RLS needs to be higher, at least 100ug/L and ideally 200ug/L or more.
It IS recommended that if your ferritin is below 75ug/L, which it is, then you do start taking an oral iron supplement.
"Gentle iron", ferrous bisglycinate is the supplement least likely to casue any gastrintestinal upset. Hopefully this is the one you've got.
The problem with taking iron orally is that most of it doesn't get absorbed. There are ways in which you can increase the absorption.
1 take it with vitamin C or a glass of orange
2 take it 30 mins before or 2 hours after eating (on an empty stomach)
3 Do NOT take it every day. Take it only once every two days. You can take a double dose.
Do NOT take magnesium at the same time as any other medicine or supplement. It interferes with their absorption.
It may take up to 3 months for your ferritin to get to 100. It then become vefry difficult to raise it nay higher orally. It may need an IV iron infusion.
I take huge amounts Vit D ( 100) and 500 Magnesium before I go to bed at night ...any less and the restlessness starts! Hang in there. There is restfullness after pramipexole. I'm off the blooming stuff and no longer suffering the way I did when on it! My symptoms are now very mild if not non existent. 🤗
Hi Ballybofey, I’m reasonably new here but yours was the first reference to a more natural remedy e.g. magnesium and vit D. Can you tell me which supplements you are taking and the dosage that please? I have magnesium citrate 200mg and vit D3 100 micrograms
In terms of taking "natural" remedies there may be a little confusion about what exactly such a remedy is. In addition, something being "natural" doesn't necessarily mean it's any better in any way nor does it mean it's safer.
For example cannabis is a known "natural" remedy for RLS. Its safety is variable and so is its effectiveness.
In terms of nutritional supplements, things may be a bit clearer. Although how "natural" particular supplements are is debateable, especially if they're manufactured and processed.
There is evidence that Vitamin D can help with RLS if you have a deficiency. It's generally assumed that MOST people have a deficiency, even more so in the pandemic so it's a good idea to take a vit D supplement.
Similarly for Vitamin B12 and other B vitamins, these are known to play a part in normal nerve function.
The most significant supplement for RLS is iron. Iron deficiency is a major causative factor in RLS. It is well accepted that if your ferritin blood test result is less than 75 then an oral iron supplement can help relieve RLS symptoms. It's possible to raise ferritin to 100 this way, at which point 50% of RLS sufferers feel some benefit.
The evidence for magnesium being helpful with RLS is less consistent. Whatever form/dose you take, take it separately as if taken at the same time as other suppelments or nutrients, it can prevent their absorption.
The other thing that can be done about RLS without taking medication is to check if there's anything making your RLS worse i.e. triggers or exacerbating factors.
Many medicines are known to make RLS including antidepressants, sedating antihistamines, some antacids, some blood pressure or heart tablets etc. Avoiding these can help.
There are also dietary exacerbating factors for some people. These can vary a lot.
Generally added sugar and simple carbohydrates, alcohol and (for some) caffeine should be avoided. Keeping a daily food diary of what uou eat and how your symptoms can help identfy what foods may be causing problems for your RLS.
Many thanks for taking the time to write this response Minerva. I’m going to try magnesium and vit D. Also the dietary advice I should be doing anyway.
Hi there Convenant! Manervas's advice is spot on. There has been no one cure but making sure I give my body what it needs on a daily basis to handle this disorder better. My RLS just is. If ain't going away. But if seems i can influence how much I suffer. At least that's the way it is today and has been this past few months. I take daily 100 ug Vit D3 and magnesium 500mg, calcium with vit d and k 350mg ....plus everything else I mentioned in my post. As Manerva said, iron is critical. Now and again I take iron ( especially after a day of heavy nosebleeds which I have because of another condition called HHT). Walking several times dsily also critical for me. I hope you find a solution that works for you. And a doctor who takes a blood test to make sure that you are not taking too much of anything. Although I know finding a doctor who listens or understands is next to impossible, in my experience.
My GP referred me to a pharmaceutical doctor, Dr. Zunic, who is amazing. She is helping me get off of my antidepressant because it is known to worsen RLS. I am following a schedule sent by Manerva to get off the hell drug, pramipexole. Dr. Zunic prescribed all the dosages I need for Manerva's schedule.
Is it 100 mg of Vitamin C? Wondering if I can take that now while I am withdrawing from the drug from hell (pramipexole). I wonder if it would help with the sleeeplessss nights.
I'm coming in on the end of this conversation, sorry, and I learn that there's some sort of addiction to this Premiprexole. One reason that I took this is bcos it was recommended, but not addictive. I had a spell many years ago with Ativan which was a bugxxx to come off, and it stays with me to this day. So much, I don't want addiction. What have I stepped into? I do know the difference between addiction and weaning off, so i am crossing my fingers.
Spurdog, there are some things you can do to avoid the pramipexole becoming too problematic:
(1) never increase above 0.088mgs (I think that’s 0.125mg in the US formula);
(2) get your GP to check your serum ferritin and if it’s below 100 start a supplement -be sure to get the actual figure - not just that you are ‘normal’ because normal for rls sufferers is higher than for others and many medical advisors don’t know this. There is evidence that pramipexole is less likely to cause problems if your serum ferritin is high;.
(3) If you can’t get your serum ferritin up, ask about getting an iv iron infusion. This helps over 50% of rls sufferers;
(4) if pramipexole ceases to be effective at that dose (0.088mg) supplement it with different treatments such as, gabapentin/pregabalin or an opioid;
(5) take occasional drug holidays from the pramipexole, being sure to withdraw from it slowly - break the tablets into smaller pieces and don’t reduce your dose more frequently than every 10/14 days.
Thank you involuntarydancer. Am on 4 tabs per night. Aim to start reducing soon/say 4 weeks away. Will be reducing by one tablet every 4 weeks (or longer period). Aiming to drop to (eventually), one per night. Also 2 paracetamol before going to bed calms me, and seems to be working. Have also "discovered" another disorder. "REM sleep disorder". I have little idea what i have, as my position seems unique. As cannot establish whether PLMD is as a result of dreams.
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