Advice on weaning off prami!! - Restless Legs Syn...

Restless Legs Syndrome
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Advice on weaning off prami!!

Netball-50
Netball-50

Hi I'm now weaned off my SERTRALINE and now trying to wean off pramipexole I'm on 0.88mg 2 at bedtime at mo I've lowered it to this I'm writing this as my legs are so bad and I'm not sleeping at the mo! Codeine helps but don't want to take it all the time!! Any advice appreciated I'm determined to get off these now 💪 supposed to having a nerve test this was ages ago not heard anything yet! Does this actually show anything?

15 Replies
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Others can offer better advice on this than I can, but you need to clarify what dose you're taking, 0.88 mg is a massive dose, way above recommended maximum. Hopefully you've missed a zero out and it should be 0.088mg.

In which case this is a relatively easier to withdraw from.

When you say "codeine", do you mean over the counter codeine or codeine phosphate which has to be prescribed. Over the counter is probably not strong enough. Unfortunately, depending on your doctor, you might find they're reluctant to prescribe an opiate for RLS.

As I say, others can advise you better, but realistically, it's not going to be easy to wean off Pramipexole.

As regards the nerve test, if you mean nerve conduction tests, these are to test for any nerve damage or neuropathy. Nerve conduction tests only contribute to the diagnosis of primary RLS by elimination. That is, if you have RLS symptoms, but NO neuropathy, then you have primary (idiopathic) RLS.

If you DO have neuropathy, then your RLS symptoms may be secondary to that. What treatment is prescribed will depend on this.

A further thought for me is, why are you weaning off Pramipexole? If it's currently working for you and you're not suffering augmentation, then at least you might want to delay weaning off it.

If your RLS symptoms were bad despite the Pramipexole, this may have been because of the Sertraline. In which case, give the chance for the effect of that to wear off first.

I'm sure others will add to this.

Hi Netball,

I’ve looked at your previous post again and think you should wait a while before reducing pramipexole.

The previous advice was to get off sertraline as it makes RLS much worse. You have done that and well done!

Give your body a few weeks to monitor the effects on your RLS.

As Manerva advises, if you are not suffering Augmentation on pramipexole, then why stop taking it?

You may find it settles.

If it doesn’t in a few weeks, then you can consider reducing the pramipexole but you’ll probably need a stronger pain killer for the 4-6 weeks of withdrawal.

In the meantime, take magnesium and ferrous bisglycinate if your serum ferritin is lower than 100.

Netball-50
Netball-50
in reply to Joolsg

Honestly guys u are so helpful on here and so knowledgable. Sorry yes its 0.088mg I take 2 but do u think I should go back up to 3??? I had an horrendous night last night with my legs!! How many weeks would u say I wait n c results of no SERTRALINE?? Where do I get the ferrous bisglycinate from?? Internet?? I have a magnesium oil spray but it doesn't do v much for legs is it better to take tablets?? Sorry for all the questions I'm determined to get some relief. Yes it's prescribed Co codamol from gp!!

Joolsg
Joolsg
in reply to Netball-50

If you’re here in the UK the cheapest ferrous bisglycinate is available online. Or Holland & Barrett sell it as Gentle Iron.

I also use PatchMD in the USA to buy iron bisglycinate patches.

Use every other night as studies have shown this increases levels more quickly.

Joolsg
Joolsg
in reply to Netball-50

Also magnesium citrate ( not oxide which isn’t the best form to buy) is available online cheaper than local health shops. Some people find the spray/gel helps. Everyone responds differently to magnesium.

I would wait 3 weeks to see if dropping sertraline improves your RLS.

As you’ve dropped one of your pramipexole pills your body will object which is why you had such a bad night.

I think 3 x 0.088 is a high dose

so maybe see whether you can manage on the 2.

Netball-50
Netball-50
in reply to Joolsg

Thank you so much think my iron was OK but seritin levels were 47 how do I get this up to normal for RLS anyway!!??? Will stay on 2 for a bit I think for a few weeks c if no SERTRALINE has done anything hope I have a good night tonight 😲

Joolsg
Joolsg
in reply to Netball-50

47 is low so take one 30-50mg pill & use one patch from PatchMD in USA every other night. PatchMD are available here and post quickly & cheaply to the UK.

patchmd.com/

Netball-50
Netball-50
in reply to Joolsg

Thanks sooo much was just going to ask what dosage gp said it was OK seritin levels!! Hope I beat this thing its the worst thing ever wouldn't wish it on anyone off to bed soon wish me luck 🤞

Joolsg
Joolsg
in reply to Netball-50

Levels above 15 are normal for everyone except us peeps with RLS. In the USA they give Iron infusions to raise ferritin levels to above 300 & many people have complete remission of their RLS.

I hope your RLS behaves tonight.

Good luck.

Netball-50
Netball-50
in reply to Joolsg

Maybe I should move to USA lol xx. Yeh fingers crossed xx which patches r they pls good night n thank you lot better than going to gp on here not a clue xx

Manerva
Manerva
in reply to Netball-50

Co codamol i.e. paracetamol and codeine isn't that potent. Might not do it unless you're using the 30mg codeine version.

I had the nueve test done now I know how prisoners felt when they went to the electric chair but besides the joke it can detect if you have a pinched nerve that causes the rls in my case my test went well so my rls is something else

Manerva
Manerva
in reply to Bat3353

Hi, if the nerve test was negative then your RLS is most likely idiopathic., (primary). There are other conditions that cause secondary RLS such as kidney disease.

Idiopathic basically means that your RLS is constitutional, similar to other constitutional or congenital neurological conditions. The implication of that is that there is no cure, any treatment is symptomatic only.

Curious that you should have a nerve test. Perhaps your symptoms had some features of neuropathy. I wonder if you've been given a definite diagnosis of RLS.

On the other hand, even if the nerve test had found something, it doesn't necessarily mean that it would have caused RLS. I have had RLS for decades, severe enough to need medication for the last 12 years, but only had significant neuropathy for less than half that time and entirely unrelated.

I’ve been on medication since 2002 the nerve test was done to rule out neuropathy and I also had a lower back mri just had a little arthritis the only other condition I have is diabetes type 2 but I had rls since the mid 90s

Joolsg
Joolsg
in reply to Bat3353

Diabetes type 2 does seem to have a connection with RLS.

Maybe a paleo, no carb or low FODMAPS diet would help both conditions.

Lots of people on here have reported that their RLS disappears if they follow a certain diet.

I know Eryl swears by no carbs & says it has completely relieved all his symptoms.

It might be worth a try.

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