Coming off pramipexole

[Carolinetidy]

I am currently on a half of 0.088 mg of pramipexole and 200mg of pregabalin and one zapain tablet. I have cut my daily dose of pramipexole to half and am going to go cold turkey due to augmentation. What can I expect ?

[SueJohnson]

You will suffer probably more than you did when you cut it to .088 mg. You might want to increase your zapain temporarily. It will take a few weeks for the symptoms to settle. After that if the pregabalin is not controlling your symptoms you might want to increase it by 25 mg every couple of days up to a maximum of 450 mg. If that doesn't work post back here.

Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

[Carolinetidy in reply to SueJohnson]

thank you so much for that very valued information

[Joolsg]

Most people will experience very severe RLS with each drop and for 2 weeks after last dose. I didn't sleep for 4 days/nights and the RLS was so severe I wanted to throw myself out of the window.I managed to get some cannabis cigarettes and they gave me 30 mins sleep. My doctors were dreadful. They knew nothing and were no help.

However, once you're off Pramipexole, the RLS reduces in severity.

Hopefully the pregabalin will start to help after you're off Pramipexole.

[Carolinetidy in reply to Joolsg]

thank you, it’s my first evening without pramipexole and I am feeling anxious wondering what sort of night I’m going to have

[Joolsg in reply to Carolinetidy]

Everyone is different. It may not be horrendous. I tried sitting with my legs up against the wall, I used a deep tissue massage gun, I used Deep Heat lotion. Anything to make the non stop jerks and RLS.

But it will improve. Each day is a step nearer to the RLS settling.

Good luck.

[Carolinetidy in reply to Joolsg]

thank you, I am so thankful for all the support I am getting. You feel so alone when you are pacing around the bedroom, up and down the stairs when you are exhausted

[Joolsg in reply to Carolinetidy]

It's awful. I just wish GPs and neurologists could see what dopamine agonist withdrawal is really like. The top US experts are fully aware how hard it is. They say it's more difficult than heroin withdrawal.I honestly think we should be in a hospital setting and helped through it with low dose opioids and cannabis.

I wish you strength. Many people on this site have been through it and know what you're going through. The first 4 days are the hardest.

The 200mg pregabalin at night will start to help once you're off the Pramipexole.

Take a video on your phone to show your GP. The more information they have, the better they will be able to help the next patient through withdrawal.

[phantom388 in reply to Carolinetidy]

just take it a night at a time - it will get better

[phantom388]

following Sue’s suggestions- I am now off Pramipexole for 3 months now, and as everyone predicted stopping at half a 0.88 tablet made my RLS quite bad for around 3 or 4 weeks, which I took codeine for, and I think I am clear of it now. My observations are that I feel better, have more energy and feel less angry about things. My RLS hasn’t gone but interestingly enough it’s more manageable, taking daily iron (late afternoon - empty stomach/orange juice) magnesium/zinc in the morning, magnesium oils massaged into legs, and a single codeine before bed. And usual food avoidance, plus also tried reducing glutamate stuff. I get woken up about 1am to 3am but with stretching exercises and a couple of ibuprofen I can normally get back to sleep after an hour or two, if you compare this to the Pramipexole augmentation I had, then give me this any day. I had a ceremonial clearing of the cupboard last week and bags of Prami all went to the chemist to be disposed of, I did desperately want to keep some ‘just in case’ but my wife made sure they were all gone, it was a big moment for me after so many years taking it. Best of luck on your journey

[Hidden in reply to phantom388]

phantom, if you take the iron closer to bed (hopefully it’s a form called ferrous bisglycinate) you may not have that 1am awakening. The iron kicks in after about an hour and lasts 6 to 8 hours. healthunlocked.com/rlsuk/po...

[phantom388 in reply to Hidden]

yes thanks - I have been mixing up the times to see but generally I am taking iron before dinner at around 5pm. Will try and move it to just before bedtime

[Loopylegs]

I'm down to quarter a 0.088mg of pramipexole, past 3 nights I've had little or no sleep, arms & legs non stop, I took the equivalent of zapain in Ireland & extra gabapentin at 4am finally dozed off around 5.30am, up at 7 to get kids out to school, tried going back to bed but legs still crawling, I feel dreadful today, exhausted , fed up, headache from lack of sleep, reminds me of a dreadful hangover, and the temptation to slightly up the pramipexole for a night's sleep is on my mind constantly but I know in the long run I'm only delaying getting off it. Not sure if cold turkey is a good idea, although my symptoms on a quarter a tab feels like cold turkey, I can understand why Joolsg wanted to jump out the window!

[Carolinetidy in reply to Loopylegs]

My first night with no pramipexole last night was surprisingly okay. I took 200mg of pregabalin at 9 o’clock and two zapain at 10 and although I had bad legs from about 11 until 11-30 the increased zapain from one nightly kicked in and I fell asleep until 6-30 and I feel energised today after practically no sleep for two weeks but I am under no illusion that I am going to have some horrendous nights but once I feel they are out of my system I will drop my zapain back to one nightly but keep taking 200mg of pregabalin

[Hidden in reply to Loopylegs]

Loopy, you might want to add ferrous bisglycinate to your mix. 25 to 50mg an hour before bed on an empty stomach and away from other medications. It rids me and many other people of RLS in about an hour. healthunlocked.com/rlsuk/po...

[Loopylegs in reply to Hidden]

I do, I take iron biglycinate & magnesium malate everyday, along with a multivitamin & omega oils, I don't think there's much I haven't tried lol!

[Hidden in reply to Loopylegs]

Do you take the iron at night?

[Loopylegs in reply to Hidden]

I haven't trued it at night, is it OK to take it with gabapentin or is it just the magnesium that can't be taken at same time?

[Hidden in reply to Loopylegs]

I would try to put an hour between them. Sue should know more.

[SueJohnson in reply to Loopylegs]

You can take iron at the same time as gabapentin.

[Hidden in reply to SueJohnson]

Ok, I decided to look it up because since I’m recommending iron all over the place I should know this myself. All of us should probably do our own research. I actually pray that people will do this because maybe they will find something you and I missed and it will make all of our lives better. Here’s what the internet says about iron and Gabapentin:

“Do not take antacids, calcium or iron within 2 hours of taking gabapentin. Do not drive or perform other activities that require you to be alert until you know how this medicine will affect you.” account.allinahealth.org/li....

[SueJohnson in reply to Hidden]

I'm not convinced. I only found one other site that said the same thing but both are health organizations that treat people and I haven't found any scientific articles to that effect. go.drugbank.com/drugs says "No interactions were found between gabapentin and Iron Sulfate." and when I checked magnesium on the same site it did show that magnesium reduced the absorption of gabapentin.

[Hidden in reply to Loopylegs]

Ok, let’s hatch a plan for you. First off, if you’re still on HRT, now would be the time to taper off. You may think it doesn’t make your RLS worse but I can practically guarantee it does. Don’t even try to go lower with the DA until the HRT is out of your system. The good news is, I believe HRT is actually neuroprotective, and even though it worsened your symptoms of RLS, it has possibly protected your dopamine receptors somewhat from the downward tug of the DA all this time.

As far as the iron is concerned, for the first night I would try taking it about two hours after an earlyish and somewhat light dinner. Don’t take any other medicines for just this one evening until two hours AFTER the iron. So just as the RLS is kicking in (7:30pm?), I would pop two Gentle Iron. Wait an hour or so and check in with yourself…see if the iron provided any relief? Either way, wait another hour then start to take your usual meds. The iron may not provide immediate relief until the HRT is out of your system.

If the iron did provide relief then I want that to be the last thing you take before bed. In other words, take the Gaba, Prami and codeine all about two hours before bed, then the iron as the last thing.

If the iron didn’t provide any relief then I leave it up to you to juggle the meds. You could still follow the above or the iron could be the first thing you take in the evening once your evening meal has somewhat left your stomach (say 7:30pm) followed by the rest of your meds at 9:30 pm and then bed (I assume) between 10pm and 11pm. At least that’s the time most people with school age children go to bed.

Muchas suerte.

[Loopylegs in reply to Hidden]

Thanks for the great advice, I had severe rls before I started the hrt but I'll taper off it and see how it goes, also I took an iron tab going to bed, I was up a few times with rls but after a walk about I got back to sleep each time which is great! I'll try take 2 iron as you recommended tonight and see how it goes.

[Hidden in reply to Loopylegs]

Yes, Pennygates just had 8 hours relief with two iron capsules and was thrilled. One only got her half way there. I believe this relief will continue for her

[Loopylegs in reply to Hidden]

I took one gentle iron last night at 7pm along with 400mg of gabapentin, then at 9pm I took 300mg gabapentin, then at 11pm I took 2 tylex (same as zapain) and my quarter DA, I slept for 1.5hrs and woke as usual but this time only my right leg was crawling, I went into the bathroom to get relief from the cold tiles and then back to bed, slept til 4am then up again same routine into bathroom, on cold tiles, back to bed and slept til 6.45am, woke with crawling in my right leg only, but very intense, this a a HUGE improvement, one leg I can handle, arms, legs and shoulders I can't! I'm going to try 2 gentle iron tonight as it's helped pennygates, and up my gabapentin again, also, I didn't take my night time dose of oestrogen gel, just the morning dose. Thanks so much to u and everyone on here, the advice is absolutely fantastic.

[TeddiJ in reply to Loopylegs]

You don't have to suffer this much....if you can't get a doctor to give you an opioid to help, then order red kratom from kraaje.eu. It stops the suffering within minutes and has saved many of us on here! Use it to get sleep until you figure out a long term plan.

[Loopylegs in reply to TeddiJ]

Hi Teddij, I've been looking up the kratom on the site you recommended, what do I buy? Is it just the powder form? How do u take it?

[TeddiJ in reply to Loopylegs]

Yes, the red kratom powder. You just take 1/2 a teaspoon (to start) in some water or juice and get it down. Your rls should be relieved within minutes. If not, add another 1/2 teaspoon (not tablespoon). This is not a great long term solution for many of us, but it is a lifesaver when you can't get any help or you are tapering off a DA. I hate reading of people going through such hell when they don't have to! It's basically a natural opioid substitute. You can also get capsules from some sites, which are easier to deal with. The powder is a good place to start and works quickly. Just search kratom in the search bar on this site and you can read all about it. As I said above, the reds are best. Try red borneo or do a search on this site for other red names, which I have forgotten. Don't get green or white though; just a red. It might help you sleep, too. Also, because of your area, it might be labelled as tea or something that is not for human consumption. They are getting around that it is not legal in the UK. It is legal in many places, however, and who cares when you are suffering this much!

[TeddiJ in reply to Loopylegs]

PS-I went off of my bio-identical hormones for a year and I don't think it helped my rls much. But, I was on the DA's for years so I don't think anything but an opioid would help me. I tried everything, it seems. I recently went back on the hormones as I was having horrible night sweats and all the other icky aging issues that come with not having your hormones balanced and at the proper levels. It is worth it for you to try going without the hormones, for sure, but it may or may not work.

Reading a bit more of what you said, I wonder if a (much) higher dose of gabapentin would do the trick? You have probably discussed that with Sue or others. I know she takes a higher dose than 400 mg's and her rls is well under control. You should try that before the kratom and then just use the kratom for the desperate times. (Sorry if I missed some of your details and you've already tried a high dose.)

[Loopylegs in reply to TeddiJ]

Thanks for all the advice, I think opioid meds definitely give me the most relief but I will up the gabapentin again first as I'm only on 700mg.

[TeddiJ in reply to Loopylegs]

You're welcome! Yes, apparently you can up gabapentin to 1200 mg's-600 twice a day. If that works, then fantastic, you should be good. It didn't work for me but I also never took a high dose; I couldn't deal with the side effects.

I would order the kratom now, either way, so you have it on hand for the bad nights. Good luck!

[RLSofManyYears]

Pramipexole is great at first, you sleep at last and all seems well. However the augmentation and withdrawal are both absolutely horrendous to the point that folk should NEVER take Pramipexole or Ropinirole. I've been through the mill with both of them. Latterly I'd been taking a couple of Pramipexole tablets interspersed with Zopiclone each week which gave me some respite. However the GP stopped the Zopiclone as I am on Temgesic as well. So it was back to sleepless nights and eventually I gave in and started to take the lowest done of Pramipexole each night. Then in conjunction with the consultant we decided I had to come off the Pramipexole. So I reduced it slowly and made a slight increase to my opioids and Pregabalin. I came off the Pramipexole about 2 weeks ago and my routine is now typically:

- unable to sleep until between 2 - 4 am as I'm jerked awake as soon as I relax

- watch some TV, walk around the house or go for an hours walk in the local area

- when I do get some sleep then its only for about an hour

- so repeat the walking, etc. By this time my brain is not functioning and so I cannot do anything productive

- If I do finally get to sleep then I'm jerked awake anywhere between 6 - 9am

- So only about 2-3 hours each night on average

- I'm unable to sleep during the day as one leg (could be either) jerks

Life is very difficult but at least it is not life threatening like cancer. However RLS really, really hurts ones life and the medical professionals have very little understanding of what we go through as some else said above. I'm a Christian and believe that I'm in God's hands and that He has a purpose for my life but it doesn't mean that I'm immune from the difficult things in life.

I don't know how but I think we need to educate our GPs and consultants to the realities of RLS. This forum is really great but we need or GPs, etc to read it and get involved. So how can we do this?

Sorry this is so long but it's good to get things off ones shoulders. Thank you all!

[Carolinetidy in reply to RLSofManyYears]

oh my goodness you certainly have had a difficult time of it. I have had RLS for about 35 yrs, started in my late 30’s and has got worse over time. I started on ropinerole about 10 yrs ago, came off that and started on pramipexole about 8 yrs ago but due to augmentation, I have over the last two years got down to half of the lowest dose with 150mg of pregabalin and one zapain. When I saw the Dr about my restless legs he prescribed pramipexole and he told me he was a RLS sufferer and when I asked him if he took pramipexole he said no he managed to do it with hot baths etc. Looking back now I now know why he doesn’t take them. Hot baths, all I can say he didn’t have them severely. I am on my 3rd night of no pramipexole, Taking 200mg of pregabalin and two zapain just before I settle down. Not as bad as expected but it’s early days. You said it’s not life threatening but there are times when I think god I’ve got this for the rest of my life

[TeddiJ in reply to Carolinetidy]

Please see my posts on your thread here-about kratom, if you need more help. There is no reason to suffer while you taper/withdraw.

[TeddiJ in reply to RLSofManyYears]

Hi. Your post reminds me of my old days of hell-how awful for you! I think you and I have interacted before, but forgive my bad memory. Are you saying you are on an opioid and this is how your nights still go? Horrific! Almost all the opioids I have tried gave me instant relief, including easy-to-get kratom powder. Eventually, and after a very tough road, I have ended up using Suboxone, which some (even local, regular) doctors are more comfortable prescribing than other opioids. I take a tiny piece of film under the tongue before bed and, as Shumbah and Joolsg have sort of said, I sometimes almost forget I have rls and how much I have suffered. I do have some side effects, of course, but my dosage is pretty low. I do think my rls morphed into plmd, as I have more of a major hip jerking than the old rls that started me on the ROP and PRAM path.

Anyway, please don't continue to live like this; you don't have to. You just need the right meds. In some cases, as with SalemLake, a sufferer just needs the right supplements and no meds. (Those folks seem to always fall into the segment of people who did not use DA's long term.)

If nothing else, and you aren't on an opioid, order red kratom from kraatje.eu until you find another plan; it stops rls within minutes.

[tagaxel]

Hell! I have been micro tapering from Pramipexole for over a year due to DAWS.

[TeddiJ]

You don't have to suffer this much....if you can't get a doctor to give you an opioid to help, which most of us did, then order red kratom from kraaje.eu. It stops the suffering within minutes and has saved many of us on here!