Pregabalin: I have been on 600mg of... - Restless Legs Syn...

Restless Legs Syndrome

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Pregabalin

DisneS profile image
18 Replies

I have been on 600mg of Gaberpentin for at least two years for RLS and a couple of weeks ago I reduced it to 500mg hoping to reduce the really severe side effects I’m experiencing (awful sensation of burning and shivering on my skin). However the reduction hasn’t helped and I wondered if anyone might know what the equivalent amount of Pregabalin might be. The doctor did give me a prescription for it last year. The dose advised was 25mg twice a day but he didn’t advise me about how much and when to reduce the Gaberpentin. Actually he is a typical doctor with next to no knowledge about RLS

Well! I tried it and had severe RLS the whole night so am really hoping to get some sensible advice from here as I definitely need to get off Gaberpentin.

Thanks to you all in advance

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DisneS profile image
DisneS
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18 Replies

Sorry, I can't answer your question directly, others may know the answer, but I do read that doses of Pregabalin are lower since it is more readily absorbed.

However, they are both calcium channel blockers in nerve cells and hence reduce nerve sensitivity. Their side effects will this be more or less the same. Pregabalin is more potent and more prone to addiction.

Pam34 profile image
Pam34

Hi

I take 150mg Pregabalin at night and have been on this dose for 9 mths. Apart from a few balance issues if I get up in the night I have no other problems. It gives me coverage 90% of time. I believe the dose can be increased to 300mg at night, but I have had no need to increase my dose and prefer to keep it as low as possible. I also take iron bisglycinate every other night.

25mg seems a very low dose. I titrated up from 50mg to 150mg in a week.

Pam

Joolsg profile image
Joolsg

25mg twice a day is very low. Dose for RLS is up to 300mg a day, but most people take at night only as that is when RLS hits vast majority.

I switched straight over from Gabapentin to pregabalin without reducing the Gabapentin. The two drugs are alpha2delta ligands, similar drugs.

I will try to find info on whether you should slowly titrate down from Gabapentin first.

DisneS profile image
DisneS in reply toJoolsg

Thank you very much joolsg. I actually went to see the doctor in desperation today as the side effects were making life unbearable. He advises that I should titrate the Gaberpentin 100mg each week until it’s out of my system. Can’t imagine what suffering that going to cause but, at least I’m going to reduce to 400mg today. Do you know how long it takes for the Gab to get out of the system?

Joolsg profile image
Joolsg in reply toDisneS

I found this article on switching from Gabapentin to pregabalin. 26 people switched straight over to pregabalin without first reducing Gabapentin BUT the study concluded that patients should reduce Gabapentin first before starting pregabalin so it is oddly confusing.

The problem is that you will suffer withdrawal symptoms if you titrate down from Gabapentin.

I suggest you email Dr Buchfuhrer & ask what he would advise. He will have more experience of patients switching.

I had only been on Gabapentin for about 2/3months when I switched straight to pregabalin. Maybe the longer you are on these drugs the more difficult it is to titrate down?

I’m sure Dr B will have an answer.

Jools

surreyandsussex.nhs.uk/wp-c...

DisneS profile image
DisneS in reply toJoolsg

Thanks again Jools, I am wondering whether there would be much point in stopping one drug for another very similar one which would probably cause the same side effects. Perhaps I should try the Neupro patch again or something similar, although, after augmenting on it in the past I would probably augment again really quickly. It was kind of you to search out those studies. At the moment I feel too tired to read them but I will when I feel a bit brighter

Diane

Joolsg profile image
Joolsg in reply toDisneS

Totally understand. I had horrible side effects on Gabapentin- that’s why I switched to pregabalin. I had fewer side effects on Pregabalin and they all went after 2/3 months so it is worth trying.

I will never touch another DA after horrendous Augmentation and withdrawal from Ropinirole but I know InvoluntaryDancer wentback on a very low dose of pramipexole after a long ‘holiday’ but she takes it with Naltrexone which is supposed to prevent Augmentation. Something to consider if you do try another DA.

involuntarydancer profile image
involuntarydancer in reply toDisneS

Just picking up on the possibility of resuming a dopamine agonist after withdrawing due to augmentation. Joolsg is correct, I am one who has returned to pramipexole (very reluctantly after a horrendous withdrawal). I restarted it about 18 months after discontinuing a relatively high dose (about 1.6mg daily).

I have been on 0.088mg for nearly a year and don’t seem to be augmenting. However, I now suspect that my system is relatively resistant to augmentation. It took a very high dose over many years before I really augmented and even then, my augmented symptoms weren’t as bad as others recount suffering from. I know that others have started augmenting very quickly after returning to a d/a even on a low dose. It’s definitely not something everyone can do.

I do also take naltrexone - currently 9mg per day and am hoping that it will stave off augmentation, having read an account by one other sufferer who discovered that naltrexone completely reversed his d/a induced augmentation and impulse control issues.

Finally, I now make sure to keep my iron levels as high as possible. I definitely find a link between low iron and pramipexole effectiveness.

I don’t post this to encourage anyone to resume a d/a. They are a really evil class of drugs in my opinion. It’s just that I really struggled to find a treatment regime that allowed anything like a normal life and this is working well for me. My intention is to reduce/eliminate pramipexole regularly in the hope of maintaining its effectiveness and I will never take a higher dose than I am in now.

DisneS profile image
DisneS in reply toJoolsg

Hi Jools I think I will get in touch with Dr B . Do you have his email?

Diane

Joolsg profile image
Joolsg in reply toDisneS

Hi Diane,

It’s

somno@verizon.net

Dr B insists on correct spelling and grammar- but he replies within hours usually.

Joolsg profile image
Joolsg in reply toDisneS

lancsmmg.nhs.uk/wp-content/...

Found this as well- again it mentions some patients switching directly from Gabapentin to pregabalin. Have a read and share with your GP.

Again, it doesn’t conclude that you can make the switch but it does describe how it can be done.

in reply toJoolsg

Wow, thanks for that Jools. Very useful information!

It's prompted me to see the GP and review medication. I started on Gabapentin last year for nerve pain and suspect Pregabalin might be better.

It is a bit ambiguous isn't it. On the one hand it says stop one before starting amother, on the other it talks about "overlap" to avoid symptom relapse.

I imagine the "stop one before starting another" bit is because some medicines interact with others. A good example is MAOI antidepressants and tricyclic antidepressants. Dangerous to take simultaneously.

In the case of Gabapentin and Pregabalin since they both have more or less the same action, then if you start taking Pregabalin before reducing the Gabapentin then in effect you're taking twice the dose.

I imagine it's tricky to titrate off one, at the same time as titrating up the other. At some point the risk is either taking too much in combination, or taking too little. Easier I guess, if you're on a lower dose anyway.

Also, changing from Gabapentin to Pregabalin might not be as critical as say, changing from one opiate to another. If you started one before stopping the other it might result in an overdose.

In any event this document is very useful.

in reply toJoolsg

PS, do you live in Lancashire?

Joolsg profile image
Joolsg in reply to

No- although I was born there.Now in polluted London.

I also found the articles difficult but I made a straight switch from Gabapentin to pregabalin without any problems- at the time I was totally ignorant about RLS and treatments.

I know some people have had a difficult withdrawal from Gabapentin and pregabalin- it can cause depression & suicidal ideation so, having read the articles, I would be tempted to make a straight switch.

in reply toJoolsg

Thanks

RosieRow profile image
RosieRow

Hi

I have recently done the switch the other way round - Pregabalin to Gabapentin. The advice from my Dr was that I could quickly get off the Pregabalin - in two weeks, and I was on 100mg - but that I needed to very gradually increase the Gabapentin as it takes more time for the body to get used to the new drug and decrease the side-effects.

So I actually did the gradual switch from one to the other, reducing one and slowly increasing the other, over a period of two weeks exactly. I probably started to increase the Gabapentin faster than recommended but I found that after the first couple of days the side effects were negligible.

My thoughts are that to do the process in reverse, you could use the same principles, reducing the Gabapentin fairly quickly but increasing the Pregabalin slowly. When I first went onto Pregablain I increased by 50mg per week until I got to 150mg which was way too high. I then came back down to 100 and, once I got some 25mg tablets, down to 75mg when things were better. But weight gain, nasty dreams and extreme and sudden onset of tiredness made me choose to try Gabapentin before (if necessary) I can go (on Dr Buchfuhrer's advice) onto just Oxycodone. I have been on 5mg of that all the time since I withdrew at the end of last year.

I am no medic - I just do what my body seems to suggest is right, and see if it works - fortunately my GP is willing to give me that leeway.

Hope you get yourself sorted out soon.

RosieRow

in reply toRosieRow

Thanks RosieRow. i had a good GP all trained up, but he moved on.

martino profile image
martino

I was on 2700mg of Gabapentin and switched immediately to 450mg of Pregabalin. I had no problems. I take 150mg in the morning, primarily for pain, and previously took 900mg of Gabapentin. I think the effect on the pain is similar

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