Almost There, Pramipexole to Pregabalin

[sidepocket]

Hello Everyone, I would like to share with you the journey I have been on for the past two months. First, my condition is augmentation from years of taking a DA to treat RLS. I posted here back in early May when I was transitioning from Pramipexole to Pregabalin With the advice that I received here I decided to see my GP and have my iron checked also to discuss my next step in treating withdrawal from a DA. As it stands my iron levels are above the recommended numbers. I discussed with my GP a strategy to reduce Premepexole and introduce Pregabalin, but the decision was left up to me. I then cut Premepexole down to 0.375 from 0.500 for one week, also gave up my glass of wine with dinner along with no caffeine after one o'clock in the afternoon with sweets being very limited. A walk in the park after dinner also helps. I then cut down to 0.250 for one week and believe me those two weeks were hell as most of you would know. After that week I reduced to 0.125 for one week at which time I introduced 50mg of Pregabalin taken after dinner. This combination for one week then 100mg Pregabalin and 0 Premepexole. I am still having to fight through symptoms but not as bad as when I first started this process. I have to mention that when symptoms were unbearable I did use small amounts of CBD oil and that did not so much curb the RLS but it did help with sleeping whenever I could catch a couple of hrs. I am now on 150mg of Pregabalin and four weeks off of Premepexole. I am feeling a lot better although not out of the woods yet. All of the actions I have taken here have been on the advice, information, comments, and encouragement that you guys have given me so thank you all again for your support, It is very much appreciated and needed to get through this in one piece. I hope that this can encourage and help anyone who is suffering through withdrawal from a DA to stay positive and stick with it the result will give you a much better life. I am looking forward to that life in the very near future.

[SueJohnson]

That's great that you are off pramipexole and already feeling better with pregabalin.😀

[sidepocket in reply to SueJohnson]

Thanks, Sue, hopefully, the symptoms will continue to subside.

[Joolsg]

That's great news. Thanks for the encouragement for any newbies about to go through this. It's hellish, but there is light at the end of the tunnel.

[sidepocket in reply to Joolsg]

That there is and I can see it getting brighter. Thanks for your comments and help, It makes life easier.

[Jumpey]

Well done! Onwards and upwards.

[sidepocket in reply to Jumpey]

Thanks for the kind words and I am hopeful that others can beat this miserable condition.

[Munroist]

Brilliant news. Hopefully this will help others suffering through the same process.

[sidepocket in reply to Munroist]

You describe it perfectly as suffering because that is what it is when RLS symptoms occur, and yes maybe this can help someone else get past that barrier and experience that freedom on the other side. Thank you very much for your comments they are much appreciated.

[rls-insomniac]

That's great news! Keep going. Life will be better without those wretched DA's. Your post is really encouraging for those going through the same. Wishing you all the best!

[sidepocket in reply to rls-insomniac]

Those wretched DAs are slowly fading into the mist, and hopefully will never be given to another unsuspecting patient. Thank you so much for your kind words, they mean a lot to me, and The best is yet to come.

[RestlessC]

Thanks very much for your post. It’s very timely, encouraging and helpful for me at this point. I’m sort of just about where you are - but not quite there yet. And as you say, almost any help I’m getting comes from here, but still I always wonder if what I’m doing is right, and if I’ll eventually get there. But there’s no one else to ask but the kind and generous people here.

As it happens, I’m now at 0.375 mg. of Mirapex, having taken over a year so far to get down from 1.5 mg. So very, very slowly, but as I see it, better to go slowly and get there some day than to quit at some discouraging point or another.

I’ve been wondering, since I’m going so slowly, when exactly should one consider oneself near enough to the end to start taking Pregabelin. I started once before and eventually gave up since it didn’t seem to be doing anything. But I didn’t really know what I was doing, probably started too early, didn’t take enough, etc., etc. At this point, I’m just trying step by step to get further down first before trying again. I was stuck at 0.5 for a very long time.

I still have to take some during the day, but am trying to go as long as possible (without going too long, and so suffering the consequences!) before taking my first one of the day, and then going as long as possible between doses. I’m now taking my first 0.125 mg. between 11 and noon, then my second between 4 and 7ish, and finally the third as late possible with hopes to someday get ghrough the night! Most nights it doesn’t let me do that. I sleep from about midnight but only for about an hour at a time max. and usually struggle from 2:30 to 3 on until I have to get up around 4 or 5.

For whatever reason, once I get up I can usually get my legs under control for most of the rest of the morning until I decide it’s time to take my first dose for the day in the late morning. And so it goes, on and on and on…

A couple of other things I noted as I read your description of your journey - I too have gradually given up my usual glass of wine at dinner time, as well as sweets, and am eating better, and have lost 35 lbs. as I get that aspect of my life under control.

Also, a couple of months ago, I suddenly got the idea that there is a big difference for me between the generic Pramipexole I was taking and the original Mirapex. I had been stuck at 0.5 mg. for so long but was almost immediately able to get down to 0.375 mg. thereafter and stay there after paying the big bucks and switching to Mirapex itself.

And as of last night, I just might be on the cusp of going down to 0.25 mg. I didn’t have a great night, but I was surprised to find yesterday’s third pill still on my bedside table this a.m. so, maybe… ?? And now, as I’ve been distracted by gardening and writing this, I realize that at 2:30 p.m., I still haven’t taken my first pill of the day (and as yet with no ill effects). But, guess I’d better take care of that right away!

Sleep (ie. lack of it at night, and so a resulting daytime sleepiness with numerous unintentional naps if I sit down for a bit) is one of my major problems in any attempt to lead a somewhat normal life. So, hearing that the Pregabelin helped you with that is encouraging. You said you started taking it at 0.125 mg.? So far nothing has helped me with sleep, including the Pregabelin when I was taking it. But, I’m looking forward to getting down to 0.125 mg. so I can have another go at it.

I hope to make it to where you are some day. Your description of getting off all these awful drugs is very encouraging. Thank you!

[sidepocket in reply to RestlessC]

Hello Restless C It is obvious that you are on the right track with transitioning to Pregabalin. When I was reducing Pramipexole in the beginning I wanted to give up many many times at 200am doing my interpretation of the Charleston and having that feeling that my body was being possessed by some evil 1920s dance instructor, I have to joke about it otherwise I would get too depressed. I found that we are all different in how we approach dealing with this disease. In my opinion, it is not the amount of time it takes it is the beating that DA into submission and getting your life back free of DAs It sounds like you could work with Mirapex and have a positive result and that is very encouraging. You were mentioning lack of sleep and dealing with RLS in the am, I can sympathize with you there. I used to and still do resort to distraction, I fire up my iPad and check the news, sports, politics, etc now if that doesn't bore you to tears! and I always ended up listening to music this would be after doing my walk about and dance, another thing I indulged in was raiding the fridge which is a no-no for other reasons but a snack or a bowl of cereal did help me get back to bed. Well, Restless C I hope you are very successful in your struggle I know you will make it. Hang in there. We are all cheering for you.

[RestlessC in reply to sidepocket]

Thanks a lot Side pocket. Think I'm making progress. Feeling that it won't be too much longer. Had my second night with just 0.25 mg. Mirapex; although I was up at 3:30 a.m. having a bath and am now nodding off over computer... We'll see!

[sidepocket in reply to RestlessC]

You are making progress and you have the perfect person with Sue advising you. She knows what works for getting off those DAs. Good Luck moving forward.

[SueJohnson in reply to RestlessC]

Start with 75 mg pregabalin 3 weeks before you are off the Mirapex. It takes at least 3 weeks to be effective but won't really be effective until you are off the Mirapex for several weeks and your symptoms have settled. Then you can increase it by 25 mg every couple of days until you find the dose that works for you.

[RestlessC in reply to SueJohnson]

Thanks for the advice Sue. So, probably I should start the Pregabelin when I get down to 0.125 mg. of the Mirapex? with the hope, that at that point, I can get off that last little bit within 3 weeks. Will see how it goes. I might have turned a corner last night, only took 0.25 the last 2 days. Will try and continue with that step down.

As for taking Magnesium prior to bedtime, if I recall correctly, you said that timing didn't matter with Pregabelin ? That just pertains to Gabapentin. Correct? And, Iron pills, I've been taking mostly every second day, but do I need to worry about when I take it in relation to other meds? Thanks!

[SueJohnson in reply to RestlessC]

Correct on the magnesium and pregabalin. Magnesium and iron need to be taken 2 hours apart.

[pianoplayerPLMD]

Your post resonates with me, I'm in the middle of the same process, halfway through coming of Pramipexole, and starting to take Gabapentin, and I can identify with the discussion you had with your GP about the changes, but that in the end it was up to you. A visit to my GP is like being in a vacuum, in which I'm telling her about all the stuff I've learned on HealthUnlocked, and she is sitting and looking blankly back at me. But I've made my plan for changing the medications, and I hope I will succeed. I am immensely helped by reading others' experiences here, and especially by the wonderful advice and support from Sue Johnson and others.

[sidepocket in reply to pianoplayerPLMD]

Hi, pianoplayerwithPLMD It is not an easy road as you well know but when you get past that let's say middle road I found that the nights were not as combative, fighting to get some sleep was a little easier, and my walkabout/dance started to fade. I am close to five weeks off of pramipexole now and still occasionally have bad nights but all is going well so keep up the good work and you will be very thankful that you did. Good luck with your plans.

Regards sidepocket

[BernieStevens]

I am still taking premipoxole along with propranolol and mirtazapine 15mg tablets and seems to be working a lot better with better night's sleep but have to admit that sometimes have a small roll up of cannabis and it eases within 5-10 mins followed by good night's sleep.