Help with my elderly mother with RLS

[abby1003]

Hello,

My mom is 89 years old and has had RLS for decades. She has taken everything under the sun and recently I encouraged her and her doctor to get off of pramipexole and replace that with gabapentin. I am worried the the gabapentin might be causing some serious side effects. She is more confused, weakness in her legs and now tingling in her feet. The nurse I work with to help my mom knows very little about RLS so I am guiding her. I'm not sure what to do here. If she comes off of the gabapentin, what should I suggest she take? Her doctor is very cautious about prescribing drugs. THANK YOU.

[Joolsg]

Hi Abby I presume you are in the UK and your mum is completely off Pramipexole. If so, when did she stop?.Severe withdrawals can last months.

What is her serum ferritin? How is she taking the gabapentin and what dose is she on?

Side effects from gabapentin settle after 2 or 3 months.

However, confusion and lack of cover may mean she should ask for a review. She may do better on a low dose opioid.

If her GP is med averse, then you may neec to see a neurologist first. One who is familiar with low dose, long half life opioids.

[abby1003 in reply to Joolsg]

Hi, no, we are in the US and she has been off of pram for 2/3 weeks and is taking 600mg of gabapentin. She just starting taking the 600mg of gabapentin, maybe 10 days ago, was taking 300 mg before. I don't know what her iron level is. She used to take tramadol but has stopped. She stopped taking the tramadol about 5 months ago. She does take .5mg of xanax every night too. Maybe she could try going back to taking the tramadol and not the gabapentin?

[SueJohnson in reply to abby1003]

Definitely don't increase it. I would wait a few weeks to see if it the side effects go away. If not she should reduce it by 100 mg every couple of weeks. Ask for a prescription for 100 mg capsules. In fact she might want to reduce it by 100 mg now.

If they don't go away she might want to try switching to pregabalin. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose.

If that still doesn't work Another one to try before opioids is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I was on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...

Take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If you have headaches they tend to disappear or lessen after around 5 days. Coffee can counteract its effects by blocking the same receptors that dipyridamole aims to enhance.so the advice is to avoid it 12 to 24 hours before taking the dipyridamole. It is possible you could take it in the morning or it is possible you can't take it at all.

Is she taking any medicines or OTC supplements as some can make RLS worse. If she is taking any I may be able to provide a safe alternative.

And as Joolsg asked, has she had her ferritin tested and if so what was it?

Did the tramadol work?

[Joolsg in reply to abby1003]

2 to 3 weeks is very, very early days. Withdrawals last a minimum of 4 to 5 weeks and can go on for months.She definitely needs to discuss the confusion with the GP. And as SueJohnson advises, don't increase until she has discussed these side effects.

You can then ask for full iron panel blood tests and discuss a switch to another med.

[ziggypiggy]

Even at a healthy 89yrs young the doctor may be hesitant to prescribe any medication, like an opiod, in the necessary dosage required simply due to how they suppress the respiratory system. You never know though.

[RLSSCARER]

Hi AbbyI'd recommend terahertz therapy device, you don't need an expensive one. 6.0 or 600watt is effective enough,

[amrob123]

They're all known side effects of gabapentin. Even people one third of your mum's age report confusion/impaired cognitive functioning on gabapentinoids.It's a really tough one given your mum's age. She could try pregabalin but she may well experience the same.

If low dose opiods are off the table, clonazepam is a possible option. It may not help RLS but may allow your mum to sleep.

How long had she been on pramipexole for? If she wasn't experiencing augmentation, going back on might be one of the few options available to her, as much as one would hope to avoid that.

There are a number of alternative medications but it's a whole lot of trial and error, and in the main, they don't appear as effective as the more mainstream ones (dipyridamole may be an exception).

I do hope you find something for her.

[SueJohnson]

I would agree with amrob123. Depending on how healthy she is and how long she is likely to live she might want to go back on pramipexole and increase it as necessary.