My partner is switching from Miramel to Pregabalin

[whale123]

Hi everyone,

My partner is Irish and he is in his late 40s. He's suffered mild RLS for a couple of years, the late night squats and walks around the kitchen used to work until we started renovating our house late last year. Went to the GP early this year and got put on Miramel (0.18mg pramipexole, as 0.25mg pramipexole dihydrochloride monohydrate). Within months, he had to increase dose to two tablets but that stopped working and now he's been prescribed Pregabalin Zentiva 50mg.

We thought of seeing a neurologist but the last time he had to wait 18 months. I don't think there are a lot of them here in Ireland. It's frustrating for us not to be able to speak to a RLS professional and the GP had asked him to stop pramipexole cold turkey and switch over to Pregabalin. To be honest, we are now trying to follow the transition process mentioned here as we read that you have to slowly wean off. It would be great to understand why there's a need to wean off.

Soon after he got prescribed Pregabalin, I think he tried cutting down Miramel by 1/2 table every few days. But I guess that might have been too quick because the symptoms were getting worse. Last night, he took 2 Pregabalin but had to take 1/2 Miramel and he said eventually he slept for a couple of hours. I wonder if he should stay on this 'concoction' for 3 weeks, as SueJohnson suggested, or maybe 1 Pregablin (since it's not effective until you're fully off pramipexole?) and 1/2 Miramel for 3 weeks and then try to remove Miramel?

P.s., he did do the blood tests and specifically asked for ferritin and transferin to be tested. However, the GP said it was all in normal range but I suspect he might not know what normal range is for people suffering from RLS. So we are trying to get a copy of the report...

I really empathise with anyone who is suffering from RLS and also their partners. I don't think I've stopped worrying for him, taking all these drugs and still not able to sleep. It's also worrying that he might have to be on them forever and we don't know what the long-term side effects are? A recent study reported possible dementia for long term use of Pregablin?! It's all very sad and scary...

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

There is a need to wean off slowly because otherwise the symptoms will be much worse and take longer to resolve.

I'm a little confused about how much Miramel he is taking. You mentioned 2 tablets but then you mentioned he was on 1/2 tablet. If his symptoms aren't really bad on just 1/2 tablet then wait 2 weeks until his symptoms settle and then he can come off it. The 3 week wait is from when he started pregabalin before it is fully effective. He doesn't need to stay on Miramel for that time. Once he is off Miramel and at least the 3 weeks have gone by and his symptoms have settled he can increase it by 25 mg every couple of days until it controls his symptoms. He doesn't need to change what he is taking now.

I assume you have seen my what helps and hurts RLS. If not let me know and I will give it to you.

There are some knowledgeable doctors in Ireland. If you let me know where you live I may be able to give you a name.

Don't worry about the risk of dementia because it is rare. 1.5%.

[whale123 in reply to SueJohnson]

Hi Sue,

Thanks for this He was on 2 Miramel tablets and then as soon as he started taking Pregabalin, he started decreasing and the last of it was 1/2 Miramel tablet. I'd say he has been on Pregabalin for almost a good two weeks. But because there were nights when it was so bad, he had to fall back on more Miramel. I think for now, he'll stick to 1/2 Miramel and 2 tablets of Pregabalin and see how he gets on. Is it better to take both together? He takes the Pregablin 2 hours before bed.

We live in Cork.

[SueJohnson in reply to whale123]

It makes no difference whether he takes them together or not.

Dr Timothy Lynch- associated with Dublin Neurological Institute. Prescribes opioids. He is knowledgeable of Mayo Clinic RLS guidelines

Professor Bradley neurologist and his team at St James Hospital in Dublin - He is knowledgeable of Mayo Clinic RLS guidelines

I assume you have seen the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a...

[whale123 in reply to SueJohnson]

Thanks for the contacts Sue. I will try to reach out to them. And yes, we are aware of the Mayo Clinic updated algorithm on RLS.

[amrob123 in reply to SueJohnson]

Where did you get the 1.5% dementia risk figure from please Sue?

[SueJohnson in reply to amrob123]

ncbi.nlm.nih.gov/pmc/articl...

[amrob123 in reply to SueJohnson]

Thanks for the link Sue.

My reading of the paper is that the hazard ratio for developing dementia is 1.5.

Therefore, the risk is actually 50% higher in people that take gabapentinoids (not 1.5% higher as you suggest).

Further, for people under 50, the hazard ratio is significantly higher at 3.16 which appears to translate to an approximate 75% greater odds of developing dementia.

The paper itself states "the gabapentin- or pregabalin-exposed group had a significantly higher cumulative incidence of dementia than the non-exposed group during the entire follow-up period".

[Rameau in reply to amrob123]

The question is: which is causative and which is causal?

We might expect the subjects of the study suffering from long term insomnia, addiction, anxiety, depression etc to be potentially more at risk of dementia, but that does not necessarily mean that gabapentinoids are the causative factor. See also:

sciencedirect.com/science/a...

[SueJohnson in reply to amrob123]

Good point. I read that wrong. Still the risk is small. For people of all ages people not taking gabapentin/pregabalin the risk of developing dementia was 3.12% and the risk with gabapentin/pregabalin was 4.63% or an increased risk of 1.51% (Table 1)

[Peter000]

I have moderately severe RLS and cannot cope without medication, My brother and sister have it as well but all three of us are on different medications. So keep coming back here to see what works for different people and you should come up with a workable solution. Do pay attention to diet. Red wine will set me off but not always so it may not be easy to see what is the problem. Tramadol 150 mg taken at 8pm is currently providing full relief for me. Good luck with your partners treatment.

[TheGiz]

I can only offer my 2 cents from my own experience. I'm male, early 50s now but mid 40s was when my symptoms started (also whilst renovating our house). I tried all the standard treatments and had an iron infusion. The only thing that has worked for me is Tramadol. Might be worth a try. Obviously Sue and others here are very well informed so their advice is great.