Pregabalin

[Mikki01]

Hi neurogist set me a plan to get of ropinirole but then going forward I will be on 150mg of pregabalin twice a day, is that the normal dose and what time would you recommend taking it

[LotteM]

Go slow on your ropinerole reduction! Check out the rls-uk.org website for guidance of how to reduced (under ‘useful resources’). Furthermore, pregabalin for RLS can be taken in the evening/at night only, as we usually don’t get daytime symptoms. If you do have daytime symptoms, they should reduce and disappear when you reduce your ropinirole dose ( as they are associated with augmentation on the ropinerole).

[Mikki01 in reply to LotteM]

Yes thank you I have been on here got all the information. Cannot wait to just have it at night 😴 out of interest what do you class a night, when in bed or when sitting relaxing watching tv at about 8 or 9 pm. I'm currently in augmentation so it can start from as early as waking up or some days I can get to 5pm but then I need to take ropinirole which then take 2 hours to kick in and I'm having the worse time ever. Also it knocks me out at 6pm. So my life is at the mercy of the rls.I just hope pregabalin works for me what does do you take an approx time at night

[SueJohnson in reply to Mikki01]

There is no need to start pregabalin now and you certainly don't want to start with 300 mg as that is the upper limit of the usual effective dose for RLS as described in the Mayo Updated Algorithm and you may not need that much. You want to take only the amount you need.

Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks and your withdrawal symptoms have settled. After that increase it by 25 mg every couple of days until you find the dose that works for you.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours.

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 200 to 300 mg of pregabalin."

[Mikki01 in reply to SueJohnson]

Great was making sure the dose was right. It's a gradually removal of ropinirole doing what you recommend them slow onto this with the aim of 300mg a day due to how bad I've got it.

[nick-the-turk in reply to SueJohnson]

Hi Sue regarding the dosage of pregablin I'm taking 450mg of pregablin is that dosage to high as I'm trying to change meds as not working great and gained a lot of weight since taking pregablin but getting little help from GP thanks Nick

[Mikki01 in reply to nick-the-turk]

So are you still getting bad RL on it, weight gain is not something I was made aware off

[Oscarcat63 in reply to Mikki01]

You will not necessarily gain weight on pregabalin. BUT apparently it may cause water retention and increased appetite.I actually have lost weight - no, I wasn't told about possible weight fmgain either.

I just switched to a Mediterranean based diet and added some exercise because of high cholesterol.

It is worth a try - but you may find that it's not a good fit for you.

My dose is 300mg, btw. I just have to make sure I have no chocolate/cake/pizza/burgers etc in the house ! 🤣

[Mikki01 in reply to Oscarcat63]

Dear lord I as if we have to worry about weight gain on top of rls

[nick-the-turk in reply to Mikki01]

It's something to be aware of but not everyone will suffer same side effects I've gained about 12 or more kilos since taking pregablin and only have a light breakfast and a cooked tea I exercise and work and 8 hours day five days a week so I'm active

[nick-the-turk in reply to Mikki01]

Yes still bad can't sleep in same bed as wife pacing the room most nights difficult when holding down a full-time job

[Sweet76 in reply to nick-the-turk]

Hi

your situation similar to mine and most nights I end up on coach I long to sleep in my bed with my wife and a good night night sleep after a hard days work, since being here on forum I’m hoping you will start feeling in control of rls seeing doc Tuesday and will start pregablin and hopefully off 45mg codeine my wife brought vitc and ferrograd iron pills a my rls s little better and have started on spore gut digest and hopefully help with my digestive system, I was diagnosed after a colonoscopy to have diverticular disease of colon and see this can cause or aggravate rls

Hang in there I totally understand your frustration

[SueJohnson in reply to nick-the-turk]

No it is not too high. You can take up to 600 mg.

If you decide to come off it you need to do so very slowly to avoid withdrawal effects. Reduce by 25 mg (100 - 200 mg) every 2 weeks. If you do so you will have very few or no withdrawal effects. If you do have any, slow down even further, In very very rare cases you still might have withdrawal effects.

[nick-the-turk in reply to SueJohnson]

Thanks Sue any suggestions on next medication if they agree to change it ?

[SueJohnson in reply to nick-the-turk]

Yes - buprenorphine - see this post of yours and the discussion on it . healthunlocked.com/rlsuk/po...

You could try the patch since it is on the formulary if you can get the doctor to prescribe it but it only lasts for 4 or 5 days so you need to be prescribed enough. If no luck see Dr Robin Fackrell privately at Sulis Hospital in Bath who will prescribe both the pills and patch - Joolsg says he does zoom appointments. Of course then you have to try to find an area that allows it as described in that post.Don't let him prescribe Neupro (rotigotine) which is DA.

The other possibility is targinact which is approved for RLS in the UK. It is supposed to last 12 hours but it needs to be taken every 6 hours to avoid mini withdrawals so be sure your are prescribed enough.

[nick-the-turk in reply to SueJohnson]

magic thank you, i don't ever get to see the same doctor thats another obstacle so maybe Dr Fackrell will help

[Joolsg]

No. You start pregabalin at 75mg and add 25mg every other night up to 150mg taken around 2 to 3 hours before bed.Stay at 150mg until you are completely off Ropinirole and 2 weeks after the last dose of Ropinirole. Only increase if RLS symptoms not covered.

UK neurologists still don't know how to prescribe gabapentinoids for RLS! Night only.

[EOLHPC in reply to Joolsg]

Vert helpful discussion! Glad you posted, Mikki01💞

Just wondering, joolsg, cause do I recall you have autoimmunity etc like me:

What if alongside RLS you are on heavy duty polypharmacy & starting up on pregabelin because of comorbidity complexity - eg in my 72 year old case due to peripheral neuropathy & small fibre neuropathy secondary to infant onset autoimmunity…am also managing vascular Dx (childhood onset now severe Raynaud’s with chronic ischemia reperfusion injury + simultaneous Erythromelalgia, so on scleroderma protocol long term highest dose daily sildenafil, with lymphoedema+oedema & lymphorrhea)?

My consultants (neuro, rhemy, spine surgeon, gastro, palliative care hospice nurse consultant etc )have been accepting analgesics give me dreadful side effects so I only take paracetamol, but after more recent severe vertebral compression fractures segueing my scoliosis & L4/5 nerve root entrapment into even more painful, I’ve given in and incrementally got up to 50mg pregab per day. Happy to feel after only 2 weeks that both my RLS & my peripheral neuropathy pain are already damping down just enough to seem to really help. & with no apparent negative side effects except a bit of shakiness + vagueness, while am seeming to sleep better …

So am wondering:

Do you think my GP is right to say elderly complex polypharmacy immune dysfunction cases like mine with no augmentation background can safely continue to incrementally increase pregab dose…would I do best to try staying as low on dose as I can, putting up with a degree of remaining neuro symptoms across the board? 💞

[Joolsg in reply to EOLHPC]

Pregabalin is pretty standard treatment for neuropathy.In the UK, most GPs prescribe Amitriptyline- but that's a known trigger for RLS.

Pregabalin is also routinely prescribed for autoimmune MS pain and fibromyalgia.

If your GP has prescribed Pregabalin and is familiar with all your autoimmune conditions- then I would follow his advice.

50mg is a starter dose for nerve pain & RLS.

In your case, increase slowly by 25mg pills every 2 or 3 days and monitor.

And stay on the lowest dose that covers your Pain and RLS.

Most side effects settle after 2 months.

Good luck.

[EOLHPC in reply to Joolsg]

Thanks v much.

Yes, my rheumatologist had me on amitrip for years, which I don’t think helped much with anything & after incremental increases turned out to be aggravating my chronic oesophageal inflammation so stopped amitrip a few years ago.

My GP (head of practice) retired last week, so am breaking in a new younger GP, but today I messaged him this question…but feeling need of your advice too, thanks

Am v grateful 💞

[Joolsg in reply to EOLHPC]

I also have acquaintances with fibromyalgia who have responded really well to medical cannabis. They vape as needed throughout the day. It stops the pain and seems to have improvec their condition overall. Another possibility to consider.

[EOLHPC in reply to Joolsg]

Wish could, but medical cannabis specialist advised against due to my medical history of analgesic induced bowel impactions…saying any form of cannabis can do this in someone with my history 🫤

[Joolsg in reply to EOLHPC]

That's a shame. Also take magnesium citrate. It helps nerves & is a useful bowel softener.

[EOLHPC in reply to Joolsg]

Vvvvv interesting: been wondering about this for some time! My sister & her family in Philadelphia USA are big longtime fans of this. And when we were little my mother used to give us something called Milk of Magnesia” for anything related to “tummy stuff” .

What form would you suggest trying in UK?

[Joolsg in reply to EOLHPC]

I use magnesium citrate. I take 2 or 3 pills every evening. I also swear by cauliflower and pears. I eat cauliflower or broccoli every evening & take magnesium citrate pills before bed. It really helps. Also chia seeds soaked in water and then added to morning yoghurt or cereal

[EOLHPC in reply to Joolsg]

👍 thanks v much

[HelloNewYork]

I have full body RLS, which the wonderfully informed people on this site have told me may be caused by augmentation from years of taking all kinds of RLS meds to try to get relief. Right now I wear a 1mg Neupro patch that I put on in the morning, take 100mg pregabalin when I wake up, 100 mg at noon, 100 mg at 730 and 200 mg at bedtime with 50 mg tramadol. Sometimes I skip the noon and 730 doses and suffer at night and need to take another 100mg to sleep.

I have switched to a new RLS doctor recommended through the RLS Foundation to help me get off the Neupro patch and try to get off so much pregabalin, possibly to methadone or suboxone? I have brain fog, memory loss and weight gain, which some have attributed to the RLS meds. I have other health issues involving my endocrine system, though, so it's not 100% clear where it is coming from.

[Joolsg in reply to HelloNewYork]

Please make a new post to introduce yourself. No one will see this comment unless they have beeb replying to the original poster.Pregabalin is only needed at night for RLS.

You have daytime RLS because of the Neupro patch.

Once off the patch and through withdrawal- you take pregabalin at night only.

RLS-UK has a useful withdrawal schedule set out under Useful Resources.

Start reducing neupro now.

[HelloNewYork in reply to Joolsg]

Hi Joolsg, I already introduced myself awhile back and got a lot of good advice, including from you. I am seeing the new RLS dr in 2 weeks and will have him guide me to reduce the patch and hopefully the pregabalin as well. Thanks for all your help!

[Mikki01]

Why are you coming off pregabalin this is what I have just been recommended what is better then, I'm so confused now.

[SueJohnson in reply to Mikki01]

It is probably because She is taking 500 mg of pregabalin which is more than most people need and which won't do much good while she is on Neupro. She may just be trying to reduce in to a more reasonable amount since according to the Mayo Algorithm the usual effective dose is 200 to 300 mg.

[HelloNewYork in reply to SueJohnson]

The pregabalin has been great, but yes, I need to come off the Neupro and reduce the pregabalin. If I can do that without switching, I will. If not, I think I may need additional opiods. The pregabalin without the tramadol isn't enough.