Changing medication for RLS.

[Ex-rugbyplayer]

I have been to see a neurologist and he is changing over my medication from pramipexole to pregabalin. What can I expect to happen.

[Madlegs1]

Get off the Prami very slowly to minimise withdrawals.

Start the Pregabalin about 3 weeks before ending the Prami.

Otherwise it should be good.

Ruck away.

[Ex-rugbyplayer in reply to Madlegs1]

Thanks Madlegs1, appreciate the feedback

[SueJohnson]

Unfortunately you will suffer increased RLS symptoms but it will be worth it in the end. Reduce by .125 mg every 2 or 3 weeks. You may need a low dose opioid to help you through this.

[Ex-rugbyplayer in reply to SueJohnson]

Hi Sue,Thanks for getting back to me. It looks like a long road ahead to get myself sorted.

[Joolsg]

Did he give you a schedule? Did he order bloods to ensure serum ferritin is over 100?The slower the better. Minimum 3 months to reduce the Pramipexole according to the top US experts.

[Ex-rugbyplayer in reply to Joolsg]

Hi Jolson,Thanks for your reply.

The neurologist is writing to my GP with instructions,I hope, of what process he wants. Ferritin levels are fine.

[Joolsg in reply to Ex-rugbyplayer]

'Fine' for the general population is not Fine for RLS so ask for actual numbers. Over half the RLS population will have dramatic improvement by raising serum ferritin above 100, preferably 250. Sadly, as RLS isn't taught at medical school or during training in the UK ( our campaign to get it taught proved this) GPs AND neurologists have very little knowledge and are unaware that iron infusions are needed.The new Mayo algorithm (by the top world RLS experts) makes that clear.

Reducing Pramipexole is hell for the vast majority but again, neurologists are unaware of this and offer no help.

That's the most common thread on this website.

Be prepared.

Reduce by half a 0.088 pill every 2 weeks. Add 25mg pregabalin every 2 days up to the average of 200/250mg.

They only need to be taken at night.

However, they will not stop the severe withdrawal symptoms. Experts advise an opioid to help during this time like tramadol or Oxycontin.

The 8 days after you drop the last dose of Pramipexole are the toughest and many people give up at that stage. You get little or no sleep for 4 or 5 days and constant, intense 24/7 RLS. Falls are common as you HAVE to move constantly but you're exhausted.

Plan 2 weeks off work for that time as it's more difficult than heroin withdrawal (according to experts).

Stick with it and once through withdrawal the pregabalin will start to work and the RLS will become less severe and hopefully the pregabalin will allow you to sleep.

I found cannabis was the only thing that helped during withdrawal. It gave me 30mins sleep after 4 days and nights of zero sleep/rest.

Read all you can. The more you learn, the better treatment you'll receive.Most threads are about Pramipexole and withdrawal.

I wish you strength. Good luck.

[Ex-rugbyplayer in reply to Joolsg]

It sounds like you went thru the wringer….. being forewarned now gives me a chance to gather as much information as possible, like your reply, to discuss with my doctor.

Thanks again

[Carolinetidy]

Cut down very slowly. I am on a quarter of pramipexole now after nearly 9 months of gradually reducing, it will be a year until I am finally off.

[Ex-rugbyplayer in reply to Carolinetidy]

Hi, thanks for the feedback. The strong feeling I’m getting is it’s a long,slow and at times difficult road ahead.

[Woody4]

I’m one of the lucky ones. I hadn’t been on the pramipexole for years like many RLS sufferers before going to gabapentin. Though I still had some reminders of the hell others go through in the withdrawals from pramipexole I still have small episodes 3-4 months after taking my last .125 mg.

[HeBgBgirl in reply to Woody4]

Gabapentin? Or Pregabalin? Thought maybe spellcheck changed it on you? I take pramipexole 1mg but also Gabapentin 800mg 3x day as well as opioids an extended release and immediate release. RLS is a horrible syndrome. 25 Years ago there was not much known to doctors. Only sleep medicine Drs neurologists. Today I feel doctors should be schooled on RLS bc many heard of it but know little!!

[Woody4 in reply to HeBgBgirl]

It’s gabapentin. I was taking pramipexole and when my GP jumped me up to 1 mg, 3 times a day, I refused. I then went to a neurologist after texting with some on here that seem to know more about RLS than my GP. The Mayo Clinic, in one report I read, stated there was no beneficial help of pramipexole over .75 mg. I took the pramipexole with the gabapentin while reducing it by .125 until it was gone. Still get some minor augmentation every once in awhile. Now I take 1 - 300 mg gabapentin, 1 - 50 mg tramadol in the afternoon, then 600 mg of gabapentin and 2 - 50 mg tramadol before bed. Now I’m trying to slowly stop taking the tramadol. Was taking 2 in the afternoon, now just 1.

[SueJohnson in reply to Woody4]

Why are you taking gabapentin in the afternoon? Do you have daytime symptoms of RLS?

[Woody4 in reply to SueJohnson]

Your body won’t absorb 900 mg very well, so I take 300 mg then another 600 mg before bed. I know that is a poor explanation.

[SueJohnson in reply to Woody4]

You are right about that, but you can take the 300 mg 2 hours before you take the 600 mg. And the 600 mg should be taken about an hour before bedtime to allow it time to work.

[SueJohnson in reply to Woody4]

P.S. Also 900 mg of gabapentin is still a low dose. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." So you can try increasing it by 100 mg every few days to get rid of the minor augmentation and if when you get off the tramadol you have more symptoms. The same rules apply on the 600 mg. If you need more than 1200 mg, take the additional 2 hours before the 2nd 600 mg dose

[cicek]

Hi. I have just finished the process of withdrawaI (just before Christmas). I was taking Roprinirole but it's the same process. As you will hear, it's not easy and I suffered for about 6 months with RLS daily. I was also taking 4 x 50mg Tramadol daily but it didn't stop the symptoms. Perhaps they would have been much worse without it. All you need to really know it that you can do it!!!! I began my Pregabalin about three weeks before the end. For around three weeks after withdrawal was complete I had no symptoms (it was bliss) Unfortunately my GP didn't have any idea about Pregabalin dosage so I took advice from here. Began with 50 mg and increased to 100 mg. I am getting some symptoms now so I think I will have to increase again. I understand the maximum dose is 350 mg daily but I want to try and avoid that much if I can. No noticeable side effects from the Pregabalin yet. The very best of luck and just keep telling yourself you will do it. If I can, anyone can. It will all be worth it in the long run and you will get some relief.

[Ex-rugbyplayer in reply to cicek]

Thanks for the insight, looks like a long road ahead. It’s been great getting all the advice from fellow sufferers.

[WideBody]

I made the mistake of quitting cold turkey, nobody warned me. (Dopamine Agonist Withdrawal Syndrome) It was the darkest period of my life and took several years to recover. I am still working on it.

[Ex-rugbyplayer in reply to WideBody]

Thanks,Def not going cold turkey, hopefully getting support from my doc.

[HeBgBgirl]

I’m curious why Dr is changing your RX? Is pramipexole not working? Good luck

[Ex-rugbyplayer in reply to HeBgBgirl]

I’ve been on them since 2009, all doc did was increase my dose. Now legs are jumping even after taking 1.83 of pramipexole.

[HeBgBgirl]

WoW sound like me I’ve been on pramipexole .5 since about 2004 along with an IR opioid . My original dose was 2xD then actually lowered bc I was getting augmentation. That’s when opioid added. It’s been great every since. Until about year or so they upped dose to 1mg at bed along with opioid ( I also take for pain) had that surgery in June and now I keep getting it at odd times and places like years ago! In my arm, my feet, my butt and of course my legs. But when it comes on it’s starts in my lower back n butt and it’s part RLS n pain. It’s terrible bc I can’t walk it out or move around like I used to!! So basically I think something was disturbed at surgery. EMG showed no nerve damage.🤔😵‍💫😳 so bottom line is its 2:30am now and YES I’m up again rocking n rolling!! My best to you. I will ask my dr about the med u take. Thanks

[LotteM in reply to HeBgBgirl]

HeBgBgirl, what you described what happend after surgery and recently is the return of augmentation. The dose increase of pramipexole, which is now above (2x) the maximum dose is t he culprit. It most likely has nothing to do with tour surgery. Start lowering the pramixole, very slowly but steadily. As you are already on an opioid, discuss with tour doctor and see of you can temporarily increase the dose of the opioid - if necessary- during the reduction. This way tue spreading of symptoms to other body parts, a telltale sign of augmentation, should disappear.

[HeBgBgirl in reply to LotteM]

Hi LotteM I think u miss read my post? Or maybe I didn’t explain right? The increase was to .1mg along w opioid 4x that was a year just at bed. It was fine . Then surgery etc.

[LotteM in reply to HeBgBgirl]

Now you confuse me. You wrote "upped dose to 1mg at bed" and now you write t he "increase was to .1mg" (0.1mg as I read it). As you wrote your original dose was .5mg, this would have been a reduction.

From the Mayo Clinic Proceedings paper: "The acceptable maximum daily dose [of pramipexole] is 0.5 mg in most patients."

It is not about being right or wrong. I am just concerned about your worsened symptoms and I thought it reeked of augmentation. Good info about augmentation on rls-uk.org and rls.org. Have a look and consider seriously. Bad RLS while taking a DA is always suspect in my view. See it as a red flag.