Hell: Weaning off pramipexole - Restless Legs Syn...

Restless Legs Syndrome

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Hell: Weaning off pramipexole

Happyfriday123 profile image
23 Replies

I need your help: I am on my transiation from pramipexole to Gabapentin. I'm now at 300mg gabapentin at 6pm and 600mg gabapentin at 10pm. My maximum dose of prami was 0.125. I am almost off it. Every couple of days (first: weeks) I am reducing the dose which was not easy because I can't divide the tablet so that I can reasonably estimate how much it is. . But anyway...now I am just taking a little bit (maybe 1/6 of one tablet). I am going to HELL during the night. I got tramadol100 mg/ml oral drops and I need between 5 and 15 trops to be able to sleep. I hate to take tramadol but at least it helps. In the mornings it is very hard to get up and this tablet combination is just killing me and I'm afraid it will never get better. I don't want to take tramadol for a long time but without tramadol it ist just hell hell hell. Has my RSL got so much worse or is this the DAWS? I never had RLS this severe before, even though it was already severe before. It ist hard to believe that I'm suffering from DAWS because my max. dose was just 0.125mg. And second question: How long will I need tramadol in this transitional period? What is your experience with this? I am really suffering and am hopeless at the moment.

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23 Replies
SueJohnson profile image
SueJohnson

First off it usually recommended to take your 1st dose of 300 mg gabapentin 2 hours before your 600 mg for maximum effect. Second - yes it is miserable coming off pramipexole but hang in there you will make it. You probably reduced the pramipexole too quickly. It is usually recommended that you reduce every 2 weeks and even that is too quickly for some. You need to let your symptoms settle before reducing further. I would recommend going back up to the dose where your symptoms had not been so bad and then after a few days try reducing as I suggested. Once you are off pramipexole for several weeks and your symptoms have settled you may be able to stop the tramadol but discuss this with your doctor.

Happyfriday123 profile image
Happyfriday123 in reply to SueJohnson

Thank you Sue! My Doc is very nice, but she has not much clue about the timing and dosage of gabapentin intake. I will follow your 2 hours suggestion. Oh yes..then I reduced pramipexole too quickli I guess, I will try an do back up. Thank you so much. You are an angel!

Joolsg profile image
Joolsg

You are experiencing a normal withdrawal from Pramipexole. And yes it is hell!Dr. Buchfuhrer, a top RLS expert in the USA, answers all emails quickly and for free. He advised me to take tramadol every 4 hours during the worst withdrawal. I took it for around 4 weeks. I also used cannabis.

The 2 weeks after you stop Pramipexole will be hellish. No sleep for 3 or 4 days and very intense all over RLS.

But stay strong. Once through withdrawal, the RLS WILL settle and you will find you get more sleep.

Many of us have been through it so understand what you're going through.

I'm so glad I got off dopamine agonists. You will feel the same.

Stay strong and take the tramadol.

Happyfriday123 profile image
Happyfriday123 in reply to Joolsg

Thank you so much for your supportive comment. Made me cry (I am a little thin skinned today ;-) )

Joolsg profile image
Joolsg in reply to Happyfriday123

I sobbed for days. Lack of sleep, exhaustion and that horrible all over intense RLS is unbearable.There is hope. I now have ZERO RLS, can travel in cars & planes & trains easily without RLS and sleep 8 hours a night.

After withdrawal from Ropinirole I spent 5 years on 25mg Oxycontin and 150 mg pregabalin but still had severe RLS.

I'm now on 0.4mg Buprenorphine. It's been miraculous for me.

Oxycontin works well for many, as does gabapentin or pregabalin.

Keep in touch and let us know how you get on.

Happyfriday123 profile image
Happyfriday123 in reply to Joolsg

Thank you! And great to hear that you found something that works for you! I will see how it goes with gabapentin and will keep you guys informed.

SueJohnson profile image
SueJohnson

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

Happyfriday123 profile image
Happyfriday123 in reply to SueJohnson

I had my ferritin checked and I got supplementation and Iron infusion but I gave up after a while because I got really frustrated and did not want to have Iron infusion anymore. Is there any alternative to infusion? My ferritin was at 30 at the beginning and went up to 70 and then it did not go up any further.

SueJohnson profile image
SueJohnson

Repeated iron infusions unfortunately are best. The only other alternative is iron tablets which you probably have tried. Take two 325 mg of ferrous sulfate or two 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every day at the same time so it is at least 24 hours apart, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. Ferrous sulfate for most people does not cause constipation but iron bisglycinate is much less likely to. Unfortunately iron isn't absorbed as well above 75. If you take magnesium or calcium take them at least 2 hours apart since they interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron unless you take it in the morning. Also antacids interfere with its absorption so should be at least taken 4 hours before or 2 hours after you take iron.. If you take thyroid medicine don't take it within 4 hours.

Happyfriday123 profile image
Happyfriday123 in reply to SueJohnson

Thank you so much!

Jailsec profile image
Jailsec

Have you tried ropiniRole? It helps and in the morning I take methylphenid to be alert during the day. It does not cause as many side effects as to what you were taking. Maybe a bit of a balance problem.

TeddiJ profile image
TeddiJ in reply to Jailsec

No offense but she really should not go to ROP-it is just another dopamine agonist from which she will augment and have to withdraw. Please read about it on this forum and beware for yourself.

Happyfriday123 profile image
Happyfriday123 in reply to Jailsec

Thank you. Riopnirole is a dopamine agonist and therefore will lead to augmentation, unfortunately. Today I def. would not choose dopamine agonists again. Linke TeddiJ writes: beware for yourself before it gets really hard to get rid of it.

TeddiJ profile image
TeddiJ

So sorry to read your post. I'm sure it reminds all of us of the hell we have been through. Opioids and kratom are the only way to get through it. It will get better! Gabapentin probably won't work until you are done and through withdrawals. You may be able to then find a more natural solution, or the gabapentin may kick in and work just great. Just know that you also might have to rely on an opioid for good. When I started my journey to get off the DA's, I thought the opioid piece would be short term, but it wasn't. Hang in and take whatever you have to take to get your sleep, for now!

Happyfriday123 profile image
Happyfriday123 in reply to TeddiJ

Thank you. I am really still hoping for a more natural solution some day in the more distant future. Next goal ist to get rid of pramipexole and see how my RLS is doing whith this and how gapapentin will work after a while. I already said goodbye to the hope that tramadol will be super term...It will not. But last night I took it 2 hours earlier than normal and this way I needed less of it than normal which was already great :-)

TeddiJ profile image
TeddiJ in reply to Happyfriday123

How long were you on Pramipexole?

Happyfriday123 profile image
Happyfriday123 in reply to TeddiJ

Not too long compared to others I guess..around 8 years

TeddiJ profile image
TeddiJ in reply to Happyfriday123

Just curious as it affects the options-the longer we are on it, the fewer the options, it seems to me. You didn't take a high dose, so that might help!

Happyfriday123 profile image
Happyfriday123 in reply to TeddiJ

Ok, thank you. Last night I did a super No Go. After gabapentin and heaps of tramadol not helping at all I took a full pill of pramipexole (my highest dose) additionally 😏. Today I was so down that I called „my“ healer. I know..many of you will think this is crap but I have a spark of hope that it can actually give me relief. .

TeddiJ profile image
TeddiJ in reply to Happyfriday123

As I mentioned, kratom got me through so many rough patches. Can you order it? From the Netherlands? It works within minutes, so you can sleep and get your meds/plan settled. I did that, too-desperate nights of trying everything at once and also going back to the PRAM or ROP.

Happyfriday123 profile image
Happyfriday123 in reply to TeddiJ

I will check this out. Nowadays one can nearly get anything from somewhere in the web, so that shouldn’t be a problem!

TeddiJ profile image
TeddiJ in reply to Happyfriday123

kraatje.eu is one option, as many in the UK use it.

Red vein Kratom has saved so many of us on here.

Happyfriday123 profile image
Happyfriday123 in reply to TeddiJ

Thank you 😊

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