Prolonged withdrawal

[Mortlok]

Hey, Has anyone suffered from prolonged withdrawal during taper? 6 weeks ago I performer a taper but the withdrawal issues havent subsided yet. Anyone who had the same happen to them?

Thanks you

[Joolsg]

Have you started replacement meds?After Pramipexole withdrawal, very few people find their RLS has completely disappeared, so most will need to take replacement meds.

Withdrawal symptoms can last months, even when you're on replacement meds.

Or, you may find it takes a long time to find the right replacement meds to control your RLS 24/7.

Have you checked your blood results and raised serum ferritin above 100, preferably 200? That can reduce augmentation and withdrawal symptoms.

[Mortlok in reply to Joolsg]

Hey, no I'm not getting on them yet because so far, I'm not having restless legs. I'm having symptoms that aren't typical for rls: I have a strange buzzing feeling in my body when I wake up in the morning but it doesn't get beter when I move, in fact it gets worse, and it sticks around all day. I also have a song or tune stuck in my head all the frigging time.

And I have wake up early in the morning and I cannot fall asleep.

I have periods of horrible depression and dread.

Neither of these are typical for rls, but all are symptoms of withdrawal.

I really really don't want to get on other medication until I'm fully of this.

[Joolsg in reply to Mortlok]

It can take months for withdrawal to settle. Pramipexole can permanently damage the dopamine receptors and therefore cause anxiety and depression.I hope it settles. Definitely get full panel fasting blood tests and increase your serum ferritin. That can make an enormous difference.

Also file a report via FDA in USA or yellow card scheme in UK to report the augmentation on Pramipexole and the depression as part of withdrawal.

Doctors will keep prescribing these drugs unless and until they are aware of the scale of serious side effects.

[tagaxel in reply to Joolsg]

Could you tell me the source for saying that pramipexole can permanently damage the dopamine receptors?

[Joolsg in reply to tagaxel]

Dr Buchfuhrer and Dr Berkowski. They believe it's why many RLS patients don't respond to iron infusions and gabapentinoids.Dr Berkowski had a recent patient who came off Pramipexole after many years and suffered anhedonia. A complete inability to experience pleasure in ANYTHING. He committed suicide.

Look up DAWS ( dopamine agonist withdrawal syndrome)- some people never get over the depression after stopping dopamine agonists.

[tagaxel in reply to Joolsg]

Thanks! Do you have a URL? I'd like to send it to my physician.

[Joolsg in reply to tagaxel]

pubmed.ncbi.nlm.nih.gov/236....

psychcentral.com/news/2018/...

wolfcreekrecovery.com/blog/...

Dr Buchfuhrer and Dr Berkowski both have websites. You can read their views and see their webcasts at their sites.

rlshelp.org/

relacshealth.com/

[tagaxel in reply to Joolsg]

Thanks again but I was really hoping for an article saying that pramipexole permanently damages dopamine receptors.

[Joolsg in reply to tagaxel]

There isn't one. As I said, the top experts believe the D1 receptors are permanently damaged because patients don't respond to Alpha2Delta ligands or iron infusions.I don't think MRIs can yet detect the damage and presumably any tests to prove the top experts' hypotheses would have to be post mortem.

However, the articles I sent add credence to their beliefs and I'm sure they will be proved correct in time.

[SueJohnson]

5 days ago you were still tapering. You probably haven't even reached the worst yet.

[Mortlok in reply to SueJohnson]

I haven't tapered off in 6 weeks. I actually increased my dose again 4 days again

[Fingerandus in reply to Mortlok]

hi Im with you there i cannot get passed 3/4 of my pill i have terrible bouts of RLs i do then go back too a whole one withdrawal is killing me i havent had a good nights sleep in years last nite i took half of an oxycodon [[ prescribed for hubby when he cut his thumb badly]] i then went to bed went to sleep until 3.30 woke up with violent headache feeling sick and restless legs stayed up until 5.30 took a lyrica went back to bed fell straight to sleep until 8 30 am that was a good nites sleep for me I FEEL FOR YOU i dont know what you can do i have only taken half sifrol tonite see what happens ..

[SueJohnson in reply to Mortlok]

If you feel your taper was too fast you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.

[Madlegs1]

Recovery after tapering depends on your dose and length of time having been on the medication.

It took me 18 months to get off 70 mcgm of Fentanyl. Worst experience of my life.

You will get through this, but it will take time.

[Mortlok in reply to Madlegs1]

That's horrible to hear, glad you got trough it, thanks

[MrVimes]

I reached the maximum dose of Mirapexin (5 x 0.088mg tablets) after 20 years of taking them. With the help of pregabalin, I started to taper off over three years ago by reducing my dose by half a table at a time. I am now down to 1.5 tablets and am weighing each tablet so I can reduce by 1/8th a tablet every week. I aim to be off Mirapexin by mid-December (3.5 years since I started to try getting off them). So, my advice is to take it very slowly. But as others have said, it depends on how long you were on the medication, your maximum dose and whether you are taking other medicines to help to taper.

[Mortlok in reply to MrVimes]

Yeah I should take it slower it seems, really want this to be over. Thanks for the reply

[Hooked77 in reply to MrVimes]

Reading your post is helpful to me. I’m old ( I mention that because I do believe it’s a factor in trying to get off of DAs) and have been on pramipexole for probably 25 years. I’ve managed to reduce my dosage from .25mg 2xday to .125mg 2xday. That was more than a year ago and, while I’m fortunate that I sleep well most nights, I have a good bit of breakthrough jumping in the afternoons/evenings and do experience some horrible nights occasionally. I’m doubtful that I will be able to reduce further. The results of that are scary to me. What a life changer this is! Thank you for posting your experience.

[SueJohnson in reply to Hooked77]

You are better off reducing it now than when you are even older and the augmentation becomes even worse. You can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. Wait until the symptoms have settled before reducing any further. And start gabapentin now as I mentioned to you last year. If you want I can give you the information again. You can increase it up to 600 mg 1 to 2 hours before bedtime and 300 mg 2 hours before that.

Have you had your ferritin checked? If so, what was it? 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, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. 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.

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[Hooked77 in reply to MrVimes]

Thanks, Sue. I do take gabapentin. Not as much as I could but I don’t want to start that early in the day. I’ve gotten my iron up to 100 but continue to take it in hopes that it will increase even more. How are you coping with the pulsitile (sp?) tinnitus? I’m having another test tomorrow but I realize I’m stuck with it.

[SueJohnson in reply to Hooked77]

Nothing was found as the cause of it, but I am now taking Lunesta which allows me to sleep with it for almost 7 hours so can't complain.

[Merny5]

it took me 2 years to taper completely. During that time I experienced depression, anxiety and very odd “electrical jolts” throughout my body. That was over 3 years ago and I still don’t feel normal. However, I was on a criminally high dosage of a dopamine agonists. I believe that the symptoms that you are experiencing are most likely a part of your withdrawal. Hang in there, it will get better.

[Mortlok in reply to Merny5]

Thanks for this, you're the first to mention the electrical jolts, made me realise im not going nuts, thanks you very much, goodluch on your Journey and I hope you feel beter soon

[Fingerandus in reply to Mortlok]

i have those jolts too i also have trigeminal neuralgia electric face 🥴👍

[Audrina1209 in reply to Mortlok]

I get thise jolts as well...horrid things!!

[Cather]

I got off a low dose 1.5 mg of pramipexole a year ago. I had been on this dose for 4 years. Previously, i had been on 2.5 for about 20 years. Once off the 1.5 dose a year ago, I went on gabapentin - 900 mg - . This is working about 89% - sometimes I sleep through, sometimes I wake at about 2:30 and have symptoms of rls for an hour or so. Then I can get back to sleep. I still have withdrawal symptoms, but am slowly improving. Cather

[HipHop1972]

Hello Mortlok. So sorry to hear about what you’re going through sound nightmarish. I’ve had RLS for over 40 years and was prescribed dopamine agonists medication finally Ropinirole which used to be the standard treatment until it was realised that it caused augmentation. My final dosage was 6mg / day a high dose and it was recommended by RLS-UK that I needed to withdraw from it which I have been doing since October 2022 and am now down to 1mg / day. Slow and steady withdrawal by 0.25 mg per day and not reducing again for 2 to 3 weeks or until your body becomes more accustomed to the reduction. I did find that my RLS didn’t start to improve until I had reduced to about 4mg but now I’m down to 1mg it’s greatly improved but I can’t seem to drop below the 1mg. but am swing a specialist privately at the end of this month. I know our medications are not the same but a very slow reduction may help. I certainly hope so as you shouldn’t be suffering the way you are.

With very best wishes

HipHop1972

[SueJohnson in reply to HipHop1972]

I may have mentioned this to you but you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.

[HipHop1972 in reply to SueJohnson]

Good morning Sue, well it is here in the UK but still dark 🤣 Yes you very kindly mentioned that method of reducing from 1 mg. I do have a pill cutter so I can cut a 1mg into quarters. But as my life and sleep patterns have generally improved on 1mg it’s the mental side of further reduction I’m having difficulty with until I have an alternative medication which I’m hoping Doctor Jose Thomas at the Spire hospital in Cardiff Wales will be able to sort out. It was Joolsg who found him and made the recommendation as he, and this is for anyone in the UK, has a sleep clinic but also specialises in RLS, one off very few in the UK.

I will post the results of my first consultation when I have seen him, I should just add that I am having to pay to see him privately but am sure it will be worth every penny but I also feel very privileged that I can pay as I am very conscious of the fact not everyone is as fortunate. Thanks again Sue for being such a guardian Angel, it appears no one’s posts gets past your notice. 🤣🙏

[SueJohnson in reply to HipHop1972]

Ahh - understood. Good luck with your appointment.