After 20+ years on Pramipaxole, I weaned of it and started taking Gabapentin. After getting up to 1800mg, taken 600mg and 1200mg, I have now stopped as I was still not sleeping for more than 30 minutes at a time, and then having to pace the room for a good hour or so.
So tomorrow, I am about to start on Pregabelin, I have reduced my Gabapentin down to zero on doctor's advice.
My question is, how long do I give Pregabelin to work before increasing the dosage? And how much does one increase the dosage by?
It's been suggested that I start on 25mg twice per day...morning and evening....does this seem reasonable?
Really just looking for background and information on Pregabelin like this group provided me on Gabapentin.
Thanks...much appreciated.
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BurkerKing
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That’s a really low dose. Expect to feel extremely tired at first but that should wear off after a week or so. Helps with sleep while it lasts though and it has helped the insomnia I’d been struggling with.
I started off (after a break from all meds) on 2 x 50 mg a day which helped at first but it didn’t last. I soldiered on for about a year and a half though, as I didn’t want to increase the dose, even though I was suffering almost every night. About two months ago I was accidentally given the wrong dose by the pharmacy. I’d taken them for a couple of days and wondered why I was suddenly feeling so tired, like I did when I first went on Pregabalin, so checked the box and capsules, and they’d given me 150 mg capsules, so I’d gone from 100 mg to 300 mg per day! It made me realise that I needed to increase the dose, but not to that! So I’m now on 2 x 100 mg a day which seems to be mostly working okay.
It’s difficult to say how you’ll get on with Pregabalin as everyone’s different, but that’s my experience so far. The lower dose didn’t work for very long, but my RLS was pretty awful at the time.
Pregabalin and gabapentin, more or less act in an identical way and in the same sites.
You could have switched directly from gabapentin to pregabalin as long as it was to an equivalent dose. Pregabalin is actually more potent than gabapentin.
That is, without reducing the dose of gabapentin beforehand, you could have suddenly and completely stopped it one day, then start on a full dose of pregabalin the next.
Please note - this is for RLS, not other conditions such as epilepsy.
Sorry to hear that this is too late now, you already reduced the gabapentin and will have to build up the pregabalin again.
Be aware that I wrote "equivalent" dose. That means the dose of pregabalin which has the same effect as a dose of gabapentin.
The equivalence is that 25mg pregabalin is equivalent to 150mg gabapentin.
In which case you've effectively switched from 1800mg gabapentin a day (as gabapentin) to 300mg gabapentin a day (as pregabalin) i.e. one sixth.
50mg pregabalin per day is the starting dose for people over 65.
However, the typical minimum effective dose is 150mg, So starting at 50mg a day, then "that initial pregabalin dose can be doubled after 3–7 days, and then increased incrementally on a weekly basis to the maximum dose if required [BNF, 2020]"
The maximum is 450mg.
Furthermore, RLS usually only occurs at night, it is a circadian disorder, hence why take it in the morning? Pregablin for RLS is a one dose a day medicine taken only at night. This way, it will be twice as effective when you need it.
It does appear that your doctor is quite ignorant about RLS. It may help you then to learn as much as you can abouyt it for yourself. I suggest reading other posts on this site about other peoples' experiences of their RLS and their doctors. Also learn more for yourself about how RLS SHOULD be treated. Read the pinned posts.
About pramipexole - this is no longer prescribed as a first treatment for RLS because of its high risk of major complications. The main one of these is "augmentation". I cant imagine that you took it for 20 years and didn't suffer augmentation. I only took if for 4 years before suffering.
If you suffered daytime symptoms whilst taking pramipexole, that is a sign of augmentation.
Unfortunately, once somebody has suffered augmentation due to taking something like pramipexole, it can possibly cause permanent dmage and consequently, the aplha 2 delta ligands may not work.
The ligands are gabapentin or pregabalin.
This is probably why even taking as much as 1800mg gabapentin a day, it isn't entirely working.
I'm also sorry to say, it's worth a try but you may find the pregabalin doesn't work either.
Furthermore, your doctor may have missed out two major considerations for the management of RLS.
1) Iron therapy
2) Aggravating factors
1) At some time you should have had blood tests for iron deficiency, the main cause of RLS. The key result in relation to these is your FERRITIN level. In whiuch case if all tests are "normal" then -
a) If ferritin is less than 75 start an oral iron supplement
b) If ferritin is between 76 and 100 seek an IV iron infusion.
Most sufferers usually find it's less than 75 and most doctors think that's OK, but it isn't.
Raising ferritin to at least 100 can beenfit up to 50% of peioploe An IV infusion can benefit up to 60%.
Either can help reduce the need fror medication.
2) The main factors that make RLS WORSE are other medications e.g. antidepressants, sedating antihistamines, some anti-emetics, antipsycholtics, some antacids, beta blockers PLUS others.
Diet can also affect RLS.
Alcohol, sugar, nicotine, caffeine and othere stimulants can make RLS worse.
Useful supplements which may be helpful if there is any deficiency may be magnesium, vitamin B12/folate and vitamin D. Probiotics and an anti-oxidant may also help e,g, selenium or celery juice.
If despite all the above and you find the pregablin doesn't work the next option really is an opioid.
The ery best thing you can do for your RLS, I believe is to educate yourself about it You cannot rely on doctors to know what's bvest to do.
My, sounds like you are really knowledgrable. I learnef. I have always had day time usual movement disorder. My ankles jerk like hypinic. I have been having augmentation with ropinrole , which makes me drowsy. Does pregabiden make you drowsy because that brings on my day time jerks
Sorry Bill, I don't quite understand what you've written.
Did you mean drowsiness? If so, then RLS symptoms can be at their very worse when just falling asleep. I know this is usually at night.
However, symptoms can happen whenever you're falling asleep i.e. whenever that is.
This is especially true if you're suffering augmentation. That is caused by ropinirole.
In case my circadian rhythms are pretty screwed up and can vary almost daily. Falling asleep during the day is something I find almost impossible to prevent some days.
I sleep at night 2 ropirole and 2 gabipentinl. 8 hours. But I am 91 yrs old. If I doze in day the ropinrole has stopprd working and the drowsiness brings on an hour of hypnic ankle jerks. So, where do ZI go? I have never had classic sleep RLS or PLMD.l If I go tostronger ropirole, that increases drowsiness. no brainer. Do I give up ropinrole entirely and gabipentin in US is 300 mg capsles and go to pregabipintin only during day and night?
I understand that cost is a problem with medications in the US so you may not be able to increase the dose of gabapentin because of that. 300mg is about a third of what I'd expect an effective dose to be.
Pregabalin is even more expensive I believe and the best for RLS is gabapentin enacarbil, which is the most expensive.
I honestly believe that the ropinirole is your main problem and, YES, I think you should stop it.
I have read a few of your posts and realise you do not think you have RLS, or at least not typical RLS, but I can't honestly see anything you've written that can't be explained by RLS that includes the jerks/myoclonus you mention.
If you do have RLS, either on its own or alongside any other condition then ropinirole causes augmentation. This is very common and it sounds as very much as if you are suffering augmentation. In which case, the best way to deal with this is to reduce and stop the ropinirole.
Note I wrote I used to suffer augmentation. This was due to taking another dopamine agonist (which is what ropinirole is). In my case this was pramipexole.
I gradually reduced this and eventually stopped it, replacing it with gabapentin. I no longer have augmentation and rarely, as I said, have hardly any symptoms at all.
I would seriously consider then, stopping the ropinirole, but please, do not do this suddently, you need a reduction plan.
I believe the 600mg befo9re sleep. I havw problwms earlier in the day and can not favor night. I know 3:00PM is a critical time with my 91 yr old bo9dy wanting to doze. So todat, I ysed my up qalker ane went with the care giver at 1:00pm. Idid not take the 12:00 ropinrole. At 2:00 I took 1 300 gabipinten. I will take 2 300 gabipintin at 8:00. and 1 ropinrole at 9:00 pm bed time. I will wean the ropinrole If do not jerk at night. thanks Elffinfdoe.
As gabapentin and pregabalin are the SAME class of med, you should have made a straight swap without tapering. Sigh.... Yet another doctor not familiar with RLS or the meds.However, pregabalin is better absorbed and I found it had fewer side effects. Effective dose is between 150-300mg.
As you were on Pramipexole for 20 years, you may still be suffering withdrawals and your dopamine receptors may take quite a while to recover.
I was on Ropinirole for 14 years and had to use opioids to get any relief.
If the pregabalin doesn't help within 6 months, consider asking for a low dose opioid - and ensure your serum ferritin is above 100, preferably 250.
I switched from gabapentin to 200mg pregabalin with a fair amount of success. My dr wanted me to also take 100mg in the a.m. but made no sense to me so I save that pill in case rls wakes me up.
I used pregabalin for neuropathic pain for a year and my starting dose was 150 mg a day. This did make a difference but it only really started working properly when I reached the full dose of 300 mg per day. It also took a few days for the effects to build after each increase. 25mg feels very low, almost to the point where it’s doing nothing.
My doctor started me out at 75 mg of pregabalin twice a day. So 150 mg daily to see if I could tolerate it. I am now at what she tells me is the recommended maximum dosage at 150 mg twice a day. I take 150 mg right after dinner and 150 mg right before bedtime. This works for me as I have no RLS symptoms during the day while on this medication. Since this medication makes me drowsy, I prefer to take it later in the day when its side effects have the least effect on my life style. For me, it has taken quite a bit of time for this medication to be effective. At least accouple of months. I usually sleep a couple of hours, get up and read for about an hour and go back to sleep for another 4 to 5 hours. I am retired so this works, though I hope to eventually sleep through the night. By the way, I do not awake with my legs kicking, I just feel restless with an urge to move around a bit. Good luck. It is a continuing adventure.
Hi burgerKingI'm fairly new to Pregabalin but I didn't know It came in a 25 mg capsule. I started out at 75 mg 3 times a day and I wish I could have stayed with that dosage but after a while, maybe a month or so, it wasn't enough. Now I'm up to 150 mg twice a day and holding. I have Neuropathy and though I am thankful this medication works, it has caused me some side effects that I'm not happy with. I was on Gabapentin for many years until it got to the point where all it did was make me feel bad, hence the change to Pregabalin. Now I have slurred speech and a problem with balance. When standing I feel like I'm going to fall over and will put my hands out to catch myself. My vision has also blurred some and there is some weight gain as well. So It's either this or suffer with the stabbing burning pain. I don't believe you will get by on such a low dose for long. I believe the low dose is just to get our bodies used to something new. I am sure your mg will increase. I hope it works for you because having no pain is a beautiful thing. I hope you don't have too many side effects and can get by with the ones you do. Good luck.
Similarly to you i weaned off Pramipexole after 25 years, it took about 8 weeks. On advice from here i began my Pregabalin about 3 weeks before last quarter pill dose of Pramipexole. I began 25mg x2 a day for about 3 weeks then upped to 50mg x2 a day. It works a treat for me about 98% of time which im really pleased with.
I am constantly in trepidation if it stops working or i have to up dose.
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