Gabapentin

[Bloodhound669]

May have had some luck today. I had a conference call with my doctor this a.m. and she told me that she was going to prescribe Ropinirole for my RLS. She lowered my doses of Pramipexole over the last couple of weeks to get me off of it and to prepare me for this new drug. I told her NO that I want either Pregabalin or Gabapentin. She was taken aback, a little ,and asked me why and who told me this. I said "Every RLS website in the world and John Hopkins medical center". She immediately said that she can prescribe Gabapentin but Pregabalin wasn't in the V.A. system. I've printed the algorithm for her in the past but she obviously didn't read it. As to my low potassium she is sending me some potassium pills and attributed to the low marks on my "water pills" (HCTZ?). My Iron test results were fine according to her. I posted them last week here. So I will be getting my new Gabapentin in a few days. Going to be tough till then, but doable, I hope.

[Joolsg]

Good to hear you stood your ground and made her listen. I do hope gabapentin helps. Take it as per SueJohnson instructions- at night only in split 600mg doses 2 hours apart. And it takes 3 weeks at full dose to work properly. Increase to 900mg and hold there until the 3 weeks are up & then increase by 100mg every other night if necessary.

[SueJohnson]

That's terrific! I was really afraid she wouldn't give it to you. And as Joolsg said good for you for insisting you didn't want ropinirole and did want gabapentin. I just hope she prescribes enough.

I've given this to you before but since you weren't prescribed gabapentin then I'll give it to you again - basically what Joolsg said with a little added so forgive me for repeating some of what she said - it's just easier for me.

Beginning dose is usually 300 mg gabapentin. It will take 3 weeks before it is fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you.

Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime.

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin "

If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium nor calcium-rich foods within 2 hours for the same reason.

[thorp in reply to SueJohnson]

Dear Sue

Please help me

You state; "calcium and calcium rich foods will interfere with the absorption of gabapentin. So we should not take them within 2 hours of taking gabapentin.

Is this conclusion based on personal experience and/ or on some scientific studies in this area?

I take 600 mg gabapentin at 1800 and so this can easily clash with calcium rich foods in my evening meal

thank you

[SueJohnson in reply to thorp]

abcnews.go.com/Health/Treat... Neurontin is another name for gabapentin.

If the gabapentin still works I wouldn't worry about it.

[thorp in reply to SueJohnson]

thank you so much

[Lettucenotforget]

My doctor also prescribed Ropinerole... how lacking in knowledge of RLS these doctors are. Have been taking Gabapentin now for a year with good results!

[Ridgeline7]

Ok, the following is research I’ve done and although it is difficult to understand, it appears that RLS is genetic and involves the blood brain barrier. Iron appears to be the main problem and in RLS sufferers iron is not transferring into the brain. Apparently iron transfusions would be of some help but try to tell your doctor you want an iron in fusion isn’t much accepted as our CBC blood work doesn’t warrant it.

The second study is focused on the wake-sleep disturbance of RLS and also appears to be a blood brain barrier problem with glutamate not passing through.

Someone may be more knowledgeable about medical terminology than I am and could explain in English. I have had RLS since I was 30 and am now 78. It’s difficult to get your Primary MD to go along with my research but that there is research being done is hopeful.

I take: Gabapentin 300mg am & pm, Ropinirole ER 4 mg daily (on my own, I added Ropineral .5mg 4x’s a day.) This works well for me and I have no leg jumping unless I I forget to take my Rx. I don’t sleep but a few hrs at night and Marijuana helps there. Gummies and a vape pen containing weed that influences sleep. I use 1 gummie and 2 hits of the vape pen and usually another hit when I wake up at 2am. If I’m lucky I can get 5hrs sleep.

Hope all this helps and is not too overwhelming. Good luck. Diane

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

The study further reveals differences in the profile of iron management proteins between RLS and control individuals at the level of the brain and blood interface suggesting the relatively low brain iron concentrations in RLS may stem from misregulation of iron transport across the blood–brain barrier. We propose that in toto our data suggest that the endothelial cells of the blood–brain barrier serve as an iron reservoir for the brain and that the underlying problem in RLS is the lack of sufficient iron in reserve in the endothelial cells to meet physiological challenges, such as circadian changes in serum iron (Casale et al., 1981; Uchida et al., 1983; Scales et al., 1988) and the increased demands of iron during pregnancy (Ekbom, 1960; Manconi et al., 2004), conditions or times known to increase symptoms of RLS. Perhaps the mechanism underlying the use of intravenous iron supplements in treating symptoms of RLS is the ability of the iron compounds to ‘refill’ the reservoir.

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

Overall, these data provide a consistent pattern indicating a significant increase in thalamic glutamatergic activity that could produce hyperarousal in patients with RLS associated with increased waking during sleep, mostly affecting non-REM sleep and not related to PLMS. This RLS hyperarousal could also reduce the effects of the chronic sleep loss with RLS during the daytime. The Glu and dopamine abnormalities may combine and interact to produce the full range of RLS symptoms, i.e., dopamine related more to sensory symptoms and PLMS, Glu related more to the RLS hyperarousal with sleep disruption. The relative clinical and biological importance and interaction of these systems for RLS and the significance of the putative RLS hyperarousal remain to be determined.

[SueJohnson in reply to Ridgeline7]

I told you a year ago you were augmenting from ropinirole as you are taking 1 and a half times the maximum dose but you are still on it - only adding gabapentin which won't help while you are on ropinirole.

[Ridgeline7]

Thanks, but I haven’t had a single increase of symptoms with my dosage. I’m totally aware of Augmentation and am vigilant in watching for it. I know it’s a lot of Ropinirole, but smaller doses do nothing. I seem to have a tolerance for most drugs and my MD agrees and usually prescribes a higher dosage..

I’ve been a Nurse for over 50 years and I’ve “adjusted” my RLS drugs to what works for me.

[SueJohnson in reply to Ridgeline7]

Obviously it is up to you but by definition you are suffering from augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

Since you had to increase it beyond the maximum amount of 4 mg you meet the definition.