Gabapentin not working so good

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Brynmr
Posts: 67
Joined: Sat Jul 21, 2018 3:15 pm

Gabapentin not working so good

Postby Brynmr » Tue Dec 31, 2019 7:39 am

This past week my 1800 mg of Gabapentin (6 months or so) isn't enough to control symptoms. I've been adding another 600 mg but even that doesn't seem enough. Bouncy legs gets tiresome. Advice? ty

stjohnh
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Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Gabapentin not working so good

Postby stjohnh » Wed Jan 01, 2020 7:51 pm

Most likely your RLS has progressed beyond the point that gabapentin can control the symptoms. Many people with moderate RLS need something else (or in addtion to) gabapentin. There is a very slight possibility that Horizant or Lyrica will work, might be worth a try if you can get samples. Have you investigated IV iron?

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the guidelines:
https://www.sciencedirect.com/science/a ... via%3Dihub
Blessings,
Holland

QyX
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Location: Berlin / Germany

Re: Gabapentin not working so good

Postby QyX » Thu Jan 02, 2020 1:49 am

Most likely your RLS has progressed beyond the point that gabapentin can control the symptoms. Many people with moderate RLS need something else (or in addtion to) gabapentin. There is a very slight possibility that Horizant or Lyrica will work, might be worth a try if you can get samples. Have you investigated IV iron?


Indeed.

Also: have you tried any other treatments?

Regarding Lyrica: there is a slight chance it might work for you, especially when Gabapentin has worked well in the past. You have to talk to your doctor if trying Lyrica is an option or if you have to move on to other classes of medication in case you can't get IV iron in an acceptable time frame.

Regarding anticonvulsants: Carbamzepine and Oxcarbazepine also work well for RLS ... however I heard in the U.S. doctors are reluctant to prescribe it. Personally I have used Gabapentin, Lyrica, Carbamazepine and Oxcarbazepine in the past. With Gabapentin and Lyrica I only had side effects while Carbamazepine worked for about 4 years quite well. Now I still take Oxcarbazepine at the lowest dose possible (600 mg daily for me)

In case you already tried Dopamine-Agonist in the past, your only option is to look for opioids, if available Kratom and medical Marijuana.

It is quite possible that you can just keep the Gabapentin and then add a low dose of an opioid. I would suspect that the Gabapentin still has some effect. So before you stop it completely this needs to be investigated.

Brynmr
Posts: 67
Joined: Sat Jul 21, 2018 3:15 pm

Re: Gabapentin not working so good

Postby Brynmr » Fri Jan 03, 2020 9:26 pm

Thanks guys. I'll be talking to my doctor about these ideas next week. And no, I haven't tried any other treatment except an initial treatment of a dopamine which did nothing.

Brynmr
Posts: 67
Joined: Sat Jul 21, 2018 3:15 pm

Re: Gabapentin not working so good

Postby Brynmr » Fri Jan 03, 2020 9:37 pm

Iron infusion takes 4 hours. Yikes! I'd need several bathroom breaks during that time. Also I don't think I could afford them. Apparently they're pricey. We'll see.

Brynmr
Posts: 67
Joined: Sat Jul 21, 2018 3:15 pm

Re: Gabapentin not working so good

Postby Brynmr » Tue Jan 07, 2020 2:45 pm

Doc wants to add requip 0.5 mg to the mix. I believe this is ropinirole which he started me on just after I was diagnosed. It didn't do anything for me then so I don't understand why he's prescribing this drug now.

stjohnh
Posts: 1039
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Gabapentin not working so good

Postby stjohnh » Tue Jan 07, 2020 3:10 pm

Yup, ropinirole is the generic name for Requip. Maybe your doc just forgot that you had tried it before, or perhaps he feels the combination would be better than either alone, which it is. Either way, I would start with a smaller dose (1/2 tablet) for at least a few days.
Blessings,
Holland

Brynmr
Posts: 67
Joined: Sat Jul 21, 2018 3:15 pm

Re: Gabapentin not working so good

Postby Brynmr » Tue Jan 07, 2020 8:55 pm

How come half? Because it makes you sleepy? I take one tablet before bed time.

stjohnh
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Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Gabapentin not working so good

Postby stjohnh » Tue Jan 07, 2020 9:47 pm

The official dosing for ropinirole and pramipexole (Requip and Mirapex) are way too high and lead to frequent augmentation. RLS experts keep the doses of these dopamine agonists as low as possible to prevent this (and the other serious side effects).
Blessings,
Holland

Brynmr
Posts: 67
Joined: Sat Jul 21, 2018 3:15 pm

Re: Gabapentin not working so good

Postby Brynmr » Wed Jan 08, 2020 1:17 am

My doctor's a gp not a specialist and I'm not wanting to start in with a dopamine agonist. Seems to me it's just asking for more trouble down the road. I suppose you can say that about all the drug treatments for RLS but this one seems worse from what I'm reading. Can one try this drug for week or two then quit if it's not effective? If the dosage continues to increase can you switch to something else without some awful withdraw? I quit tobacco years ago so I know how bad withdraw symptoms can be. If I have to go though that again I'd rather be dead.

Rustsmith
Moderator
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Re: Gabapentin not working so good

Postby Rustsmith » Wed Jan 08, 2020 3:24 am

Gabapentin should not be too difficult to quit if you only take it for a week or two to try it out. Stopping it later on can be a bit more difficult, but that is true of most (if not all) of the RLS meds currently being used other than the iron therapies.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

QyX
Posts: 619
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Gabapentin not working so good

Postby QyX » Wed Jan 08, 2020 3:36 am

You can try DAs for a week and see how it goes.

About increasing the dose: simply don't increase the dose and when the current does gets ineffective, pause the drug and restart it 2 weeks later.

About withdrawing from DAs: let's assume ropinirole works this time and then stops working down at the road. At that point you will most likely need opioids anyway. And with opioids withdraw from DAs is easy.

If you don't take DAs now, your only option are opioids. You can look in Kratom if it is available in your country / state. But if not you can see if you can a get prescription for Codeine, Dihydrocodeine or Tramadol. Most doctors are more familiar with those lower potent opioids and a bit more willing to prescribe them. Especially GPs know those well. So this might be an option. The evidence for opioids being proper and good treatment for RLS is strong. When is willing to listen to evidence, it would be there to support opioid therapy.

In the end you will need something to cover your symptoms and your options are limited. So in your situation, if I were you, I would push for opioids 100%. I was very lucky to have had a doctor who recognised quite early after my diagnosis that I've been in a horrible neurological crisis for way over a year so I got Oxycodone within only a month after diagnosis. And now, 7 1/2 years later, opioids still work great for me at a similar dose than my first initial stable dose (back then: 120 mg Morphine, now: 160-180 mg Morphine). You never such stories about dopamine agonists. They are almost always trouble, sooner or later. But the risk is manageable if you are careful and are aware of what you are doing.

So ultimately, it is a worth a shot. At the very minimum you will gain some more information and knowledge about your response to DAs and if ropinirole fails again, you can use this is an argument to push for opioids.

This is not all bad right now. It is not optimal but it is something you might be able to work with. But also your doctor needs to learn more about RLS. Maybe you can provide him with some materials?

Brynmr
Posts: 67
Joined: Sat Jul 21, 2018 3:15 pm

Re: Gabapentin not working so good

Postby Brynmr » Wed Jan 08, 2020 4:08 am

Thank you Qyx. Your comments are encouraging and informative. I'll try this DA drug for a week and see how it goes. 7 and a half years of opioids would put me close to 80. :)

Brynmr
Posts: 67
Joined: Sat Jul 21, 2018 3:15 pm

Re: Gabapentin not working so good

Postby Brynmr » Wed Jan 08, 2020 4:13 am

Rustsmith wrote:Gabapentin should not be too difficult to quit if you only take it for a week or two to try it out. Stopping it later on can be a bit more difficult, but that is true of most (if not all) of the RLS meds currently being used other than the iron therapies.



Been on Gabapentin for 20 months. Currently @ 1800 to 2200 mg. Soooo... getting off it might need opioid assist. We'll see.

Brynmr
Posts: 67
Joined: Sat Jul 21, 2018 3:15 pm

Re: Gabapentin not working so good

Postby Brynmr » Wed Jan 08, 2020 3:03 pm

Anyone know the max dosage of gabapentin? I'm getting conflicting info online.


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