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.
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careerSquirrel
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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.
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.
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.
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?
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.
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update in RLS in pregnancy 
My RLS update after one week of medication change
Informative video on updated RLS guidelines
