RLS Update

[careerSquirrel]

Hi RLS community

I have been coming down from 200mg of Pregablin for a few months now. I’ve been slow and steady and had mostly good results. GP is on board and I have full iron panel every three months. It keeps getting better but not there yet.

Then BOOM!!

reduced to 50mg and the waking up every two hours is back. Whilst my legs aren’t jumping off the bed there is still the compulsion to move.

I’ve seen positive results with this reduction and hoped I could eventually get off medication. I’m reaching out to this community to understand what is happening. I’ve been slow to reduce by 25mg each time but I seem to have hit a wall.

I would be so grateful for any observations or knowledge on what could be the way forward.

[ChrisColumbus]

I'm afraid that I have no useful experience of pregabalin, gabapentin or any other medication for RLS.

But I note  Joolsg 's reply to your last post where she wrote that she tapered more slowly than you, had to slow down even more towards the end, was still taking oxycontin at the time, and suggested that you might continue to need some form of replacement medication depending upon your iron levels.

What are your iron numbers? Are you taking other meds for other conditions?

I'm one of the fortunate ones in that I never had low iron, found that magnesium helped, and as long as I'm careful with other meds - (statins were the bane of my existence!) - and watch what and when I eat and drink, very rarely have RLS now. But many others need some kind of RLS medication.

[careerSquirrel in reply to ChrisColumbus]

Thanks ChrisColumbus my iron levels are 117 which I know is still a bit low but much improved from where I began.

I’ve read your post on Magnesium and I also take this every day heeding SueJohnson advice about timings.

I’m not on any other medication. GP won’t go anywhere near opioids so that’s a dead end for me.

I’m just surprised that the tapering down was pretty much going well until now but I guess it might just be a case of sticking with it.

[ChrisColumbus in reply to careerSquirrel]

I wish that magnesium, iron, or indeed anything else worked for everyone.

But it's such a shame that doctors and/or neurologists won't or can't follow the evidence and safely prescribe low dose, long half-life opioids, like buprenorphine.

healthunlocked.com/rlsuk/po...

[careerSquirrel in reply to ChrisColumbus]

I just think they know so little about this and, even when presented with information, allow their own concerns about opioids to cloud their judgement.

[SueJohnson]

It's not surprising that you are now experiencing RLS symptoms. Obviously the pregabalin helped as you previously said it worked except for the weight gain. You need medicine. I previously suggested switching to gabapentin which is much less likely to cause weight gain or to try dipyridamole. Clonidine is another one which might help. Another possibility is medical marijuana. Otherwise since your doctor won't prescribe opioids you need to switch doctors or get a referral or go privately to a neurologist. What city do you live in?

[careerSquirrel in reply to SueJohnson]

Thank you SueJohnson

GP was reluctant to switch to gabapentin as he said I’d experience the same issues although I’m reaching the conclusion that the weight gain is a necessary trade off for a nights sleep.

I am waiting for a referral to neurologist but I doubt that will come round soon so a private appointment might be best.

I may go back up to 75mg as this seemed to be the lowest I could go and still be symptom free.

Appreciate all the advice as always

[SueJohnson in reply to careerSquirrel]

I would ask your doctor to let you try the gabapentin. No harm since you can switch directly and switch back. And as I said it is much less likely to cause weight gain.

[careerSquirrel in reply to SueJohnson]

I live in Derbyshire

[SueJohnson in reply to careerSquirrel]

Salford Royal (based out of Cheadle (near Manchester) - Dr Christopher Murphy who is excellent. Runs a Sleep Clinic

Sheffield Adult Neurological Sleep Service located in Sheffield

Renaul has a doctor in Manchester who prescribed buprenorphine. You could message him for the name.

[careerSquirrel in reply to SueJohnson]

Thank you so much. I will try the gabapentin argument and check to see how those references work out.

Sue, did you tell me you take Pregablin? Is this a medication people can safely stay on for life?

[SueJohnson in reply to careerSquirrel]

Yes you can safely stay on it or gabapentin for life.

[Joolsg]

RLS doesn't 'go away' for most of us. We WILL require medications to control it & have any quality of life.Clearly, pregabalin was controlling it.

But if you stop the meds, RLS returns.

So, you will need replacement meds.

If your GP refuses to consider opioids, you can insist on an urgent referral to a knowledgeable neurologist.

Or, you could try Low Dose Naltrexone.

A few people on here have had excellent results with it. You need to use a private clinic and pay around £40 a month for a private prescription. Average dose is 4.5mg.

Here's the link.

actionforme.org.uk/get-supp...!

Another possibility is to try dipyradimole.

sciencedirect.com/science/a...

[Bganim1947]

I’ve been on 150 mgs Extended Released Pregabalin twice a day and 100 mgs of Tramadol. Three times a day for several years now with great results. No side effects and my RLS has been completely under control. Medication is necessary to manage this condition.

[Wordsworth99]

Hi CareerSquirrel, I’m going through a similar thing as I reduce my nightly intake of codeine. I have reduced slowly from 120 mg and now, when I got to 30 mg, I’m also struggling. Like you, I’ve seen positive results with this reduction and hoped I could eventually get off medication. I’m still hopeful though!

My thoughts are that if others can be medication free by ensuring adequate iron and/or magnesium levels, then why not us? People who think that they will always have to be on medication perhaps have not fixed an underlying deficiency, even if they think they have. For instance, it’s difficult to determine a magnesium deficiency because 90% of this crucial mineral resides within the body’s cells. Blood tests just determine free floating magnesium I believe, and that will be the last amount to be used up.

So my plan is to go back up to the last dosage that worked, keep taking iron and magnesium threonate (which is a superior form of magnesium) for some time (a month or two) and then try to continue reducing the codeine. We are both now on really low doses of our medications and I think there’s a good chance we can become medication free!

There’s talk of dopamine receptors being damaged after being on dopamine agonist medications for a considerable amount of time, however it’s unclear whether this actually always happens and if the body can repair them. I for one am determined to keep on trying to cure my RLS, and not give up by assuming that I will need a medication of some sort the rest of my life. I wish you all the best!

[careerSquirrel in reply to Wordsworth99]

Thank you Wordsworth99 it’s great to hear I’m not alone in this.

I’ve never taken dopamine agonists mostly due to the information I picked up on this forum. The knowledge on here is superb.

I also take magnesium but I have made a note of magnesium threonate and will be upgrading this soon.

I have gone up to 75mg of Pregabalin again to help me level out and get some consistent sleep. It’s not what I’d hoped for but a necessary step at this time. I will keep taking iron, keep negotiating with the GP and hopefully get to see a neurologist soon.

I wish you well.

[Hooked77]

someone on this forum said to me, “it’s not a race”. Good advice. I think it helps to remember that.