Pregabalin Journey

[careerSquirrel]

Hi

Just a quick reach out to the RLS community. I’m still using 150mg of Pregabalin along with daily iron tablets (hard to get infusion on nhs)

Iron levels are slowly increasing but it is slow!!

I’m at Oain Clinic today as part of Fibromyalgia check up. Whilst pregabalin is keeping my RLS at bay and providing good sleep, it has led to substantial weight gain.

This isn’t a situation I want to live with so reaching out to ask if there are any other medications that work like Pregabalin but don’t lead to weight gain.

Thank you

[ChrisColumbus]

Good to hear that RLS remains under control. Pregabalin is commonly linked to an increased appetite which will lead to weight gain unless eating is controlled (difficult) and/or exercise increased (can also be difficult particularly if one has mobility issues). The same can also be said of gabapentin, although sometimes the side-effects that bother on one may not on the other.

You had good advice from Joolsg , SueJohnson and others when you last posted about this:

healthunlocked.com/rlsuk/po...

[careerSquirrel in reply to ChrisColumbus]

Thank you.

Always useful to revisit good advice.

Has anyone used Topiramate or Levetricum (apologies if I’ve completely misspelled those medications)

Are these medications dopamine agonists? In previous posts, it’s suggested these medications are weight neutral.

I will also speak to consultant about Gabapentin

[SueJohnson in reply to careerSquirrel]

Topiramate may help RLS but in most cases make it worse. Levetiracetam may help

[careerSquirrel in reply to SueJohnson]

Thanks, Sue.

The outcome of my appointment was dissatisfying. Consultant said there is no evidence either medication work for RLS. Suggested a nerve test along with anti depressants.

She concluded that weight gain is ver common on both gabapentin and Pregabalin and I should try hypnotherapy.

I just about didn’t cry and left feeling very deflated. I did all the things right such as direct her to the mayo algorithm and the advice in different countries but apparently You Tube is the answer

[ChrisColumbus in reply to careerSquirrel]

Even (!) NICE now recognises that the dopamine agonists can end in augmentation..:

"Restless legs augmentation syndrome (earlier onset of symptoms in the evening/afternoon, increase in symptoms, and involvement of other extremities) is a very common adverse effect. The manufacturer advise that if this is suspected, the lowest effective dose should be used, or stopping treatment should be considered."

...and the off-label use of pregabalin and gabapentin for RLS:

"The use of pregabalin for restless legs syndrome (RLS) is off-label.

Initial dose: 75 mg in people aged under 65 years and 50 mg in people aged over 65 years.

Titration: maximum recommended daily dose for RLS is 450 mg."

"The use of gabapentin for restless legs syndrome (RLS) is off-label.

Initial dose: 300 mg if the person is under 65 years old and 100 mg if the person is over 65 years old.

Titration: maximum recommended dose for RLS is 2700 mg."

cks.nice.org.uk/topics/rest...

Beyond this there are the opioids that Jools mentioned in her previous reply to you. Some info here:

healthunlocked.com/rlsuk/po...

[Joolsg in reply to careerSquirrel]

All anti depressants trigger or worsen RLS. NICE and NHS guidelines are aware of that.This consultant really doesn't sound knowledgeable.

Which hospital? She needs to learn the basics.

Low dose, long half life opioids work well for RLS if weight gain is an issue on pregabalin.

[careerSquirrel in reply to Joolsg]

Thank you and I agree with you - she was both rude, ignorant and unhelpful. Is there a link to this I can prove / show at my next appointment or is it all in the algorithm??

[Joolsg in reply to careerSquirrel]

cks.nice.org.uk/topics/rest...

This is the relevant page from UK NICE guidance. If GPs do not read NICE guidance or follow the recommendations, they are in breach of duty and Switalskis have advised they can be sued for negligence.

As it's set out in NHS and NICE that anti depressants worsen RLS, you are simply letting your GP know the current UK treatment. We know it's already outdated and needs to reflect the Mayo Clinic Algorithm, but even in its current state it warns about anti depressants and requires blood tests to increase serum ferritin.

Hopefully the GP will be less rude and unhelpful when you direct her to the UK guidance.

Good luck.

[RestlessNinja]

Hi,

I’ve lost weight since starting Gabapentin (300mg Neurontin) two months ago. I’ve dropped a whole dress size, and my weight is still decreasing. Not having to get up and walk during the night has stopped my overeating. I used to head straight for the fridge during these nighttime walks. The relatively low dose of Gabapentin has also significantly lessened my leg pain, which has improved the quality of my exercise. With the discomfort in my legs gone, I can also stretch more effectively. I’ve heard that Pregabalin can lead to weight gain, which is why I prefer "old-school" Gabapentin.