I'm suffering badly with Pramipexole ... - Restless Legs Syn...

Restless Legs Syndrome

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I'm suffering badly with Pramipexole withdrawal despite help with Temgesic. Any advice please.

puzzler1 profile image
19 Replies

I'm sorry I've been off the forum lately but I'm really struggling with coming off Pramipexole. I have been reducing the prami by about a quarter of a 0.125/.088 a week and been taking Temgesic since early October. The Temgesic can no longer control the RL so I'm wondering what I can do next. The last 4 - 6 weeks has been really difficult but now I've hit rock bottom.

I took my last Prami, 2 nights ago and have barely slept since then, even though I took 3 x 200mcg temgesic before bed. There's no relief at all through the night and getting up and walking/stamping about only gives a few minutes relief before I have to get again. It's worse than I've ever known. Spending a lot of time in tears with exhausted frustration.

I've got some madopar in the cupboard which I have used successfully for car & plane journeys and taking two in water gives about 2 hours of relief. I've also got a full box of Gabapentin which was prescribed a while ago but I have never used because the Temgesic was so successful. I'm thinking of taking the occasional madopar to get a bit of respite.

Should I start taking the Gabapentin straight away and would it make any difference at this stage. I'm reluctant to increase the dose of temgesic.

Any ideas how long I may have to put up with this before I see an improvement? Any help or guidance would be appreciated. What a ghastly drug Premi is!

Roll on next year! And thanks to all the forum advisors who have got me this far over the last 12 months.

19 Replies
Heatherlss profile image

So sorry to hear Temesgesic is not helping with the withdrawal. I don't have much idea but you said that you're taking 3* temesgesic before bed. How about you try distributing the dose and taking it like 2 hours or so before bed ? Sometimes, the medication works better that way. Also, do you take your medication before RLS comes on or after it comes on ? Taking it before is going to be more beneficial. When I take a holiday from DA, I take 100mg of Tramadol (50mg at a time ) and it helps somewhat. Nevertheless, it loses it efficacy i.e. withdrawal takes over so I go back on DA.

rls-insomniac profile image

Hi Puzzler1

I'm sorry to hear of your struggles with your final withdrawal from prami, despite the Temgesic. I can only add that the last part is the hardest. Maybe you are doing the last bit a little too quickly, Rather than reducing your dosage once a week, try doing it every 2/3 weeks. Maybe your symptoms won't be so severe. I know it's tempting to "just get it over and done with", but it can make your withdrawal much more intolerable if you do it too quickly.

When I took my last DA, I didn't sleep for about 48 hours and was up pacing through most of it. It took a few days to calm down and things started to ease. At the time I was taking 1200mgs of gabapentin, 15mgs of oxycodon and 100mgs of tramadol. A real cocktail! It didn't really help an awful lot.

The final part of the withdrawal is the hardest of all. All I can suggest is that you slow it down a bit.

puzzler1 profile image
puzzler1 in reply to rls-insomniac

Hi rls, Thanks for your reply. I've finished taking the last prami Monday evening and really reluctant to start again.I'm only taking the Temgesic at the moment - a half at 5.30pm, 1 at 9.30pm, 1 at 10.30pm and 1 at 4.00am in the night. I suppose it must be doing something! I'm only prescribed 2 a day but luckily I've got some over from a slow start up in October. I had an iron infusion a while back so I know my ferritin is high and I've started taking magnesium again to help.

I'm just hoping it begins to subside after a few days like you or I might have to re-start the prami.

What dose of temgesic are you on at the moment and is it working for you? Do you take anything else as well? Happy New Year!

rls-insomniac profile image
rls-insomniac in reply to puzzler1

Hi Puzzler. I hope that since your post things have started to ease off, even if it's just a little bit. If you can hang on in there, it will get better. I think the reason for your terrible suffering is because you reduced your prami too quickly. I also understand your reasoning for not wanting to take another tablet, but if things are unbearable, then why not take a lowest dose pill, even if it's just one. It may provide you with much needed relief for a short while.

If I'm right you are taking 700mcgs of Temgesic at the moment to help get you through the withdrawal period. To be honest, as this is the only drug you are taking, I wouldn't worry too much about that if it's helping you. I took two opioids during my final withdrawal and to be honest, I would have taken anything if it helped me get through it!! In any event, I believe that Shumbah is taking 1mg of Temgesic per day split into 4 doses to manage her RLS. Although I do appreciate, of course, that everyone is different!

So, currently I am still taking 300mgs of Pregabalin along with 400mcgs of Temgesic. There are some days when I am completely free of symptoms. It's wonderful! I have been keeping a diary of events since I started taking Temgesic. There appears to be a bit of a pattern for me. I will go 2/3 days when I get very mild symptoms in the evening, but these don't last for too long. I also am finding that once or twice a week I get breakthrough symptoms during the night which sometimes necessitates me getting up. I make myself a cuppa and I'm usually back in bed within an hour or so. I find that playing Solitaire on my phone helps to distract me.

Keep strong and I wish you all the best. A Happy New Year to you too! Here's hoping that for you and so many others, your symptoms will greatly improve. xxx

I think rls-insomniac is probably right. You may be reducing too fast.

I wouldn't add tramadol , you'd then be taking TWO opioids.

Gabapentin takes about 3 weeks to work and isn't much help with withdrawals.

A benzodiazepine or a Z drug may help with sleep.

Joolsg profile image

Puzzler- the 10-14 days after the last dose of dopamine agonists is the worst. I didn’t sleep AT ALL for 2/3 days & was bruised everywhere from constantly falling down ( had to keep moving but exhaustion was overwhelming).

Don’t be tempted to take Madopar- you’re simply prolonging the agony.

However, if you’ve reduced too quickly that can also be a problem.

Illegal cannabis was the most help during withdrawal for me. It gave me a precious 30mins sleep.

I hope you can get through it.

Madlegs1 profile image

I found Clonidine and Valium to be of the most help in coping with the last stages of withdrawals. But I had been coming down VERY slowly.I agree with the above reply- even to go back up a stage until you get some acceptable relief, and then start tapering down again, as slowly as possible.

The last stages are definitely the worst.

Slow, slow ,slower still.

You will get through this.

It will be a bad dream, but there is sunshine ahead.

Good luck.

puzzler1 profile image
puzzler1 in reply to Madlegs1

Hi Madlegs, thanks for the advice.Do you think dropping 0.125/0.088 a month is too quickly. That's 6 months for 6 tablets which I thought would be about ok. I did drop the first 3 more slowly but had no additional meds.

I don't really want to start taking them again. Do you think some gabapentin might help?

Madlegs1 profile image
Madlegs1 in reply to puzzler1

It's not about what I think. Or what may be convenient for you.It's your body screaming at you.

Just listen to it.

All the best.

puzzler1 profile image
puzzler1 in reply to Madlegs1

Thanks, if it gets too bad I'll probably have to do as you suggest - but to be honest I'm not doing this for convenience!

Well done for getting this far. Coming off pramipexole is incredibly hard. It typically takes about 14 days from the last dose for symptoms to start to settle and it may simply be a case of waiting out this torturous stage.

However, I too think it sounds like you withdrew a little too rapidly. When I last withdrew from pramipexole I did not drop a dose more frequently than every 14 days. My penultimate dose was one quarter of a 0.088mg tablet which I took for 16 days and the final dose was one fifth of a tablets (obviously with the tablets being so small the division was not absolutely equal) which I took for 15 days (ie 3 tablets). This definitely minimized the impact. BUT I was reducing from a fairly low dose and I was not in augmentation when I was reducing so my situation is not on all fours with yours.

Ultimately, you will have to decide whether you should resume a very low dose of pramipexole for a while and reduce even more slowly. Judging from the accounts of others, there is a risk that you will experience these terrible symptoms at the end even if you do. A degree of suffering seems to be almost inevitable when coming off this drug after augmentation.

Another option would be to increase the dose of temgesic for a while. There are others on here who are on a higher dose (I sometimes require 4x 200mcg to control my rls). Or you could try a different opioid such as oxycontin to get you over the worst of it.

Benzodiazepines may help also as suggested above. Cannabis might provide some assistance

Gabapentin will not help with the current symptoms at all. It may ultimately be helpful (though there is some indication that it is less effective for those who have previously augmented on a d/a) but I would avoid adding it right now because you have enough going on at present. Do not take sleeping tablets unless you have rls symptoms under control as there is an additional risk of injury if you fall asleep while standing/walking.

puzzler1 profile image
puzzler1 in reply to involuntarydancer

Thanks for your reply. I have upped the dose of temgesic to 3 and a half, taken at intervals through the evening and night but the last few nights have been pretty awful. Worse than anything I've had before. I am hoping that I can stand it until the symptoms ease up a bit and the Temgesic can control it again. I'd be interested to know what your usual dose is and when you take it and whether it's working ok for you. And what your doctor prescribed for each day. Mine's just 2 x 200 per day.

LotteM profile image
LotteM in reply to puzzler1

Puzzler, why don't you call your doctor and explain the situation. And ask for temporary extra doses of temgesic. I remember Joolsg saying that she used tramadol every 4h and marijuana during several days after her last dose of ropinirole ( another dopamine agonist). As you are already on a strong painkiller, it seems more logical to temporarily increase the dose - as you have done - rather than add another painkiller, like tramadol or oxycodon. Also, temgesic works pretty fast, thus you can add doses on an as needed basis.

Meanwhile, please hold on and persist. You are doing very well. You have a great husband who started your contribution to HU (I assume it is "Mrs P" we're talking to now) and will certainly help you through this difficult phase. I hope the symptoms will ease very soon!

puzzler1 profile image
puzzler1 in reply to LotteM

Hi Lotte, thanks for your help. Everybody's been really good with their advice, help and encouragement. I think I'll take it a day at a time and either take extra temgesic (I've got spare) or continue with a small dose of prami until things settle. I felt really awful this morning but improved a bit this afternoon. It's actually a pretty good time to be out of action. Brian's at home all the time and we're on our own because the family couldn't come for the holidays. But not a great start to the New Year! Thanks, best wishes and hope the temgesic is working ok for you.

LotteM profile image
LotteM in reply to puzzler1

However difficult, but a good way to start the new year. Based on so many experiences of others (my augmentation was in its very early stages when I stopped the ropinirole) you will feel better soon. And a bit later you will probably be able to reduce your doses of Temgesic again.

The Temgesic has changed my life. Oxycontin worked relatively well for my RLS, but I felt horrible. The Temgesic works far better (0.2 mg evening dose well into the morning) and a daytime dose for 0.1 mg (1/2 tablet) allows restful times even in the afternoons. Although I can feel that the RLS hasn't left, it is just below the surface.

And I feel 'me' again.

Now I just need time to recover from years of terribly fragmented sleep and restless days. I am hopeful to return to a more or less normal life again 🤞🏼😊. I hope you'll feel the same too, soon.

Jules1953 profile image
Jules1953 in reply to puzzler1

I am taking 2 x 200mcg of Temgesic each night and I have already gone through the Sifrol withdrawal process. The Sifrol medication is out of my system now and I require 2 x 200mcg Temgesic each night to control my RLS.

So it makes sense that at this stage for you, you will need 4 x 200mcg Temgesic to help you through this rough patch.

Plus I was taking Gabapentin as well.

I did not run out of Sifrol, so if I was having a rough night I would take a small amount of Sifrol to ease the jerking. Even a quarter of 0.125mg of Sifrol would help.

It took me 2 years to slowly wean off the Sifrol and the last few months were very difficult.

Jules1953 profile image
Jules1953 in reply to puzzler1

Instead of taking the Temgesic at intervals, try 2 x 200mcg Temgesic an hour before bed.Then when going to bed take another 2 x 200mcg Temgesic.

Jules1953 profile image

Yes, it is very difficult getting off the last small dosage of Sifrol (Pramipexole). It will not hurt to take a fourth Temgesic tablet and see if it helps.

You say you have run out of the Sifrol, as I found that I had to still take a small portion of 0.125mg of Sifrol for many weeks. It took a long time to get the effects of the Sifrol out of my system.

I was also taking some Gabapentin at the same time during those weeks of the final withdrawal from Sifrol.

It takes a long time for our brains to get use to not having the Sifrol.

And for our brains to start producing dopamine of its own accord again.

You will not truly have peace until all the horrible effects of the Sifrol have left your body and your body has adjusted to being without it.

All the best from Julie McGowan, Western Australia

puzzler1 profile image
puzzler1 in reply to Jules1953

Hi Jules, Thanks for your reply. I haven't run out of prami so taking another dose is a possibility. It's just difficult to decided what to do for the best. This is my 4th day without it and this morning I felt really awful with headache upset stomach and very shaky. I think I'll see how tonight goes and see what the morning brings. I don't really want to go backwards and then have to face this again in a few months. I've been weaning off prami for over a year but speeded up when I got the temgesic as it seemed so good. Glad to hear that things have improved for you. My max dose was 6 x 0.125/.088. Just wondered what yours was, for comparison?

Take care and Happy New Year

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