Need Help

[Woody4]

What is the recommended starting dose for gabapentin. Dr has prescribed 300 mg before bedtime. I am taking .5 mg of pramipexole now, will it be ok to take the gabapentin with the pramipexole??

[Madlegs1]

Why are you starting Gabapentin? And why taking such high dose of Pramipexol? That's twice the max dose for RLS!!!!!!?????Gabapentin should be started at 100 and titrated up to whatever is effective every 3 days. 900 usually is effective.

But whatever dose you take is p!ssing in the wind as long as you are on that dose of Pramipexol.

I take it there is a back story to this???

[Woody4]

Sorry I can’t help with the dead laptop. Mad legs, I’ve been weaning myself of off pramipexole. My neurologist had me on 1mg and wanted me to go to 1mg 3 times a day when I started augmenting. I quit going to him and have talked my VA GP into giving me a script of gabapentin till they can find someone in the area that knows something about RLS.

Thanks Minerva, I thought I had read on a post about starting gabapentin while on pramipexole. This has been the worse case of augmenting I’ve been through and I was worried about taking both at the same time.

[SueJohnson]

Manerva says you shouldn't go above 1200 mg, but I had to go to 1400 mg to get complete relief. If you are in the UK, you can switch to pregabalin, but if you are in the US, it is very expensive.

[Woody4]

From what I can find pregabalin is not approved for RLS in the States.

[Tecumsehmoe in reply to Woody4]

My U.S. Doc has prescribed pregabalin telling me it would be better than gabapentin as I weaned myself off pramixole (I'm down to .125 mgs/night). I take both with .5 mgs clonazapan nightly. Brain fog and dizziness upon waking is worth RLS relief and is reduced by caffinated coffee.

[Woody4 in reply to Tecumsehmoe]

My VA Dr had to be really harassed to get her to prescribe the gabapentin. If the FDA hasn’t approved a drug for a disease, she won’t prescribe it. Pregabalin has not been approved for RLS as far as I can find. If it has, please tell me where I can find the information.

[LotteM in reply to Woody4]

If you are in the US (VA = Virginia) try to find a quality care centre selected/approved by rls.org. If you can afford it, it is useful to become a member of rls.org.

[LotteM in reply to LotteM]

There is one at Johns Hopkins, Baltimore, Maryland. And another at the Emory Clinic, Atlanta, Georgia.

See: rls.org/treatment/quality-c...

[Woody4 in reply to LotteM]

VA stands for Veterans Affairs and I am a member of the RLS.org. Unfortunately for me there is no RLS center near me and the closest Dr with RLS knowledge won’t take any new patients. Even if he did he’s over 100 miles away.

[LotteM in reply to Woody4]

Sorry I got that wrong. Well done for convincing your current doctor with good information. I wish it wasn't such an uphill struggle. I hope the gabapentin works for you and without any or very few side effects 🤞🏼

[Woody4 in reply to LotteM]

After a week, no side effects at all. Hoping it stays that way. I have had to go from 300 mg to 600 mg. From what I have read 900 mg seems to be the norm. So I’m in the good for now.

[LotteM in reply to Woody4]

Good news, Woody. I hope it lasts. So good to hear when someone finds relief after a struggle. Will you let us know in a few weeks how you're doing?

[Woody4 in reply to LotteM]

Thanks LotteM. It’s been great sleeping through the night. I hope my Dr does a little research on her own about RLS. I know I’m not the only one with RLS. Hope you are winning your fight too!!

[Tecumsehmoe in reply to Woody4]

Through Kaiser-Permanente, which I believe to also be available to you as a Virginian.

[Tecumsehmoe in reply to Woody4]

I'm sorry to say I'm at a loss when it comes to telling you whether or not the FDA has approved pregabilin for Willis-Ekbom disease (I think it important that we abandon the RLS nomenclature as it serves to encourage those who think the condition unworthy of serious research). All I know is that my Kaiser Permanente doc prescribed it to me as being more effective than Gabapentin. Perhaps the FDA website, if you haven't already tried that.

[SueJohnson]

Pregabalin is available in the US. It is covered by my insurance. Horizant isn't covered by most if not all insurance plans and is very very expensive ($6869.18 although you can get it at Healthwarehouse.com for $5548), but you can get it.

[Woody4]

Pregabalin is available in the U.S. but it isn’t FDA approved for RLS.