Pregablin

[Annieapple]

I have been on Pregablin just over 3 weeks now after finally stopping the Neupro taper. My dose at present as of Monday is 150mg. I take this at 8pm. However around midnight the RLS kicks in.. not the diabolical stuff as with Neupro, nevertheless severe enough to keep me awake. Tonight I have taken 75 mg at 6pm and will take my usual 150mg at 10pm . Is this a sensible plan? I am trying to do this without opioids to keep them for emergency breakthrough pain, travel etc.. I am scared of tolerance with codeine. Many thanks

[SueJohnson]

150 mg is still a low dose so it is not surprising it doesn't completely control your RLS, I would take it all at one time 1 to 2 hours before bedtime to get the maximum effect at night.

If you do that tomorrow night since obviously it is too late for tonight and it doesn't control your symptoms increase it by 25 mg every couple of days until it does.

If it does control your symptoms let a couple of days pass to see if it continues to, then reduce by 25 mg to see it the lesser amount controls your symptoms since you want to take the lowest amount you need. If you only have 75 mg tablets then cut it in half.

[Annieapple in reply to SueJohnson]

Thanks so much Sue. Will do that. Mine come in capsules but will ask my GP for some 25mg caps on Monday. Your quick response much appreciated!! X

[Annieapple in reply to SueJohnson]

Su! Thank you ☺️ It worked taking full dose at 8pm. No codeine needed for 2 nights!!

[SueJohnson in reply to Annieapple]

That's great!

[Matrix]

Try not to get addicted to opiates if you can , so hard to get off , I’m having a horrible time of it and found out the other day that it takes four months for your brain to rewire after coming off them . I’m off now and 1 month in and restless legs are so bad I can’t stay in bed plus all the other pain the opiates were helping Fibromyalgia . I want to go down every night but I have suffered so much I can’t. 🤗🤗🤗

[Annieapple in reply to Matrix]

🤗🫣 Oh I do feel for you! It’s so horrible! Yes my biggest fear is becoming reliant on the opiates! They work SO well for me. However I have followed the advice given here and have managed 2 nights without codeine! SO hope and pray you get the help you need! Xx

[Matrix in reply to Annieapple]

I mean I never took more than the dr gave me and it really helped .i was on them for 35 years back then the dr didn”t tell me they were addictive . I also have high strength co-codamal they don’t do much . I have done it on my own slowly and I wish I hadn’t come off them , it takes months for the brain to get back to normal after using opiates . We trying to move to Spain and been in touch with chemist there and drs don’t prescribe the one I have .🤗🤗

[violetta254 in reply to Matrix]

Addiction is different than reliance.. Taking a low dose opioid ( to reduce RLS) that you do not have to increase is not addiction.

[Matrix in reply to violetta254]

That’s me then I have never upped the dose . So it is not addiction and restless legs are very bad at the mo xx

[Ceba1]

Annie.::

[Ceba1]

Annie,

I am in a similar situation. I came off pramiprexole about two months ago and had horrible RLS symptoms. It was violent, full body convulsions, any time I tried to rest, or even trying to sit still - like on an airplane - my body would shake.

Like you, after coming off a DA, I started on pregabalin and have gradually been increasing the amount. I am now at 300 and it is beginning to work, sort of.

For example: Last night I fell asleep at 1 am, woke up at 2:30 am, went back to sleep again at around 4:30, then woke up at 10:30 am. This is actually an improvement because i fell to sleep earlierI, and had a longer stretch of sleep than before: even though it took a bit to get there.

I find that taking the pregabalin earlier “helps.” Last night I took it around 5 PM and got my first sleep at 1 am. On other nights when I took it at 730 pm, I didn’t have my first sleep until 430 am. Obviously, this is far from ideal. However, it tracks as improvement. I plan to give it a few more months and then revisit.

I am sure you have checked your iron. My iron is low but my GP won’t order an iron infusion. She just keeps telling me to take oral iron - which I do, but it’s still low. I am finally seeing a specialist on Monday -Dr. Buchfurer - and hopefully I will be able to get the infusion. I will let you know how the meeting goes.

My best advice is to read here and post here. You will learn much more than from your doctor. It took me a while to accept that my doctor just didn’t know and was getting things wrong. I grew up in a culture of thinking doctors were like gods and anyone who thought they could know better than their doctor was just a fool. In many cases it’s not like that today. Most GPs and many neurologists just don’t understand RLS. Or maybe they do but for other reasons - administrative within the hospital - they don’t want to do what seems to be required in many cases; take people off DAs, order iron infusions, try gabapentin, then try pregabalin, and if necessary move to a low dose of an opioid. It’s an unpleasant process for the patient with difficult withdrawal symptoms, it draws attention to the doctor because the iron infusions and opioids are disfavored by “managed care,” and it is time consuming for the doctor and disruptive to their practice. It doesn’t fit well into the profitable model of 15 minute consultations in high volume, which gets the doctor favored and advancement ($$$$) within the current model of health care delivery.

This group is an amazing resource. I will continue to report - even when this is under control (optimist), and urge you to do the same. Let’s be one of the angles that circle back and help others.

[Annieapple in reply to Ceba1]

Ah thank you Ceba1 delighted to hear you are moving in the right direction!! Hope your appointment with Dr Buchfurer is really helpful. I am in the UK & am fortunate to have a GP who is really helpful & prepared to listen. She regularly checks my Iron & prescribes iron tablets when it dips below the norm for RLS patients. As advised here by SueJohnson I took 225mg at 8pm and slept well aided by a relaxing bath & KennyG 🎷 music. No breakthrough pain needing codeine 🤸‍♀️