coming off pramipexole

[Gizmo1coco]

Starting my journey of coming of pramipexole today. I’ve been taking 600mg of gabapentin for 4 weeks and today I’m reducing by 1/2 a 0.88mg. I also take magnesium in the morning and 2 cocodamol at night. I’m dreading the withdrawals is there any other advice anyone can give 🙏🏻

[Joolsg]

Read the withdrawal schedule on RLS-UK website under Useful Resources.It tells you what to expect.

Paradoxically- when I was withdrawing from Ropinirole- it was fine until I reached the last 1mg.

I honestly didn't think I would get through it. But I did.

Make sure you arrange 3 or 4 weeks off work and ALL commitments after you drop the last dose. You will get little to no sleep for at least 2 weeks.

But then it starts to improve.

Don't take more than 900mg gabapentin until you are off Pramipexole because it doesn't help much until around a month after the last dose of Pramipexole.

And file a Yellow Card Report so UK doctors realise the damage they have caused!

Take videos of the worst nights to show your GP. It might help persuade them to stop prescribing these terrible drugs.

Good luck. You can do it.

If withdrawals get bad- insist your GP refers you to a specialist who can prescribe an opioid to get you through the last stages.

Codeine, tramadol or Oxycodone taken for 4 or 5 nights after each dose drop can really help.

[Country_Bumpkin87 in reply to Joolsg]

My gp today decided yes to coming off ropinirole yet as no official diagnosis & the treatment only started last spring but was instantly beneficial-it meant reducing other opiates day & night…

NOW I have to continue on 3.5mg instead of 4 at night but even that is waking me struggling- she refused to restart pregabalin yet also didn’t bother to refer for official diagnosis & help- instead due to weight loss & clear emergency endoscopies- she has referred back to gastro & thinks gynae could find endometriosis back causing issues to boot but ignored struggling to come off ropinirole!

She then ALSO decided to cut the zomorph back to only 10mg morn & eve with 10mg sevredol instead of 20mg to top up… NOT helpful as know this withdrawal is going to be far worse than when originally removing the opiates!

I may put a separate post although plenty of advice to read & go from there - these forums are great 🙂

Doesn’t help I’ve had 2 batches of antibs for different infections neither I’ve been prone to before but that’s further wiped me & am suspicious thyroids swinging or am reacting to having to take folic acid-

…….so removing ropinirole without substituting truly feels like mission impossible whilst already struggling! & I didn’t get on well long term with gabapentin originally it caused other problems!

Thanks for reading xx

[SueJohnson in reply to Country_Bumpkin87]

All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition. This is the only way it is diagnosed. So if you meet these you have RLS and you don't need a doctor to give you an official diagnosis. Do you meet these?

This is the correct way to come off ropinirole: First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut if needed.

To come off ropinirole reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and you should ask to keep your opioid dose for now to help with the reduction. But in the long run, you will be glad you came off ropinirole.

On the pregabalin, the beginning dose is usually 75 mg pregabalin. Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks and your withdrawal symptoms have settled. After that increase it by 25 mg every couple of days until you find the dose that works for you.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours.

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg of pregabalin."

Have you had your ferritin checked? If so what was it? This is the first thing a doctor should do for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. 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. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen without progesterone and sometimes even with it, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.

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 like therapulse, using a standing desk, listening to music, meditation and yoga.

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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.

[Gizmo1coco in reply to Country_Bumpkin87]

Sounds like you are having an awful time with a gp that’s not very understanding of your situation. Thankfully mine has been great so far

[Country_Bumpkin87 in reply to Gizmo1coco]

My original chap suddenly went on leave- I avoided him for some time as blamed years housebound on his wrong decisions to ever have me on fentanyl! However he was young following guidelines & what at the time we both felt was right!

Now yes I agree opiates wrong way forward for pain management particularly & should be only a last resort. He saw how I fought & got myself for strong coming on very little which was the 10-20mg daily but without tops of quick release.

He suspected the rls or equivalent last spring or summer then I didn’t look back on opiates as actually slept better without throwing myself around so much spasming etc so they weren’t needed in same way!

only discovered it even an actual problem due to sharing a bed again sometimes & all of the list to follow answers Being yes so he said no brainer nor other referral necessary purely monitor side effects (to which I had none after initial few days except noticing when next slow release was due)🙈🤔 xx

[SueJohnson in reply to Country_Bumpkin87]

I see venlafaxine on your profile. Are you still taking it? It is a SNRI antidepressant and makes RLS worse for most. Wellbutrin and trazodone are safe for RLS.

Time your medicines so that you take your thyroid medicine at least 4 hours from any medicines that contain aluminum, calcium (or calcium rich foods), iron and magnesium (or magnesium rich foods). DAs like pramipexole inhibit TSH secretion so brings down thyroid hormones. Conditions associated with hypothyroidism can make RLS worse so want to bring it up.

[Country_Bumpkin87 in reply to SueJohnson]

Need a whole serious med review yet currently having to go with the flow of what they demand. That’s is why being uk based knowing my pharmacist initially monitored adjustment into it- maybe he can help further coming off it! Or some support to other gps in the practice.

Yes originally switched to venlagaxine not for depression but for fatigue however after health worsened depression or replace to that med kicked in it’s fairly useless probably again review but they can’t do many things at once plus won’t even allow me access to further regular bloods monitoring any changes around these big changes

I am not anaemic however hypo thyroid alongside vit d deficient sometimes have to top up calcium but supposedly iron is fine- so I find folic acid need only for 3 months to be mighty confusing also- mum had hyper thyroid went hypo after early menopause & stress from divorce then it balanced she’s not needed help since BUT very low b12 also has an autoimmune skin condition

Don’t think all is coincidence but fully aware I’m a gp nightmare lol 😳😔xx

[SueJohnson in reply to Country_Bumpkin87]

Doctors will say your iron is fine, but what is fine for others is not fine for those of us with RLS and ferritin is the number you need and it is not tested by a normal iron test so do ask for a full panel iron test. If needed refer to or print out the NICE or RLS-UK guidelines on the ferritin showing you do need to be tested.

[Birdland in reply to SueJohnson]

Sue, I have thyroid issues and take levothyroxine. From what I have learned, the lower the number on TSH, the more thyroid hormone a person is producing. So someone with hypothyroidism will have a higher TSH number and someone with a hyperthyroidism will have a lower TSH number. Conversely, T4 will be higher in with hyperthyroidism and lower with hypothyroidism. Please let me know if you find my information to be wrong. Thanks

[SueJohnson in reply to Birdland]

You're correct.

[Gizmo1coco in reply to Joolsg]

Thank you so much for your advice. Never heard of yellow card but I will definitely do this. First day was absolutely fine thankfully. Unfortunately I am self employed so taking 3-4 weeks off work is not an option for me. Taking videos is a great idea. I’m working with my doctors pharmacy and have an appointment every 2 weeks with them which will be a great help. They are willing to take it a slow as I want it to be. Really appreciate all your help. Thank you

[Joolsg in reply to Gizmo1coco]

Not even doctors have heard of the Yellow Card Scheme!In the last 5 years there have been only 22 reports of Impulse Control Disorder and drug-induced worsening (augmentation) for ALL dopamine agonists combined.

That's why doctors and health bodies keep prescribing these dangerous drugs. They have no idea that tens of thousands are suffering dreadfully.

Here's the link. Ask for your GP to be informed as well.

If you experienced gambling, spending, overeating or hypersexuality- you have 3 years to bring legal action against the doctors who failed to warn you of this VERY common side effect.

bnf.nice.org.uk/medicines-g...

[Kickabout]

I’m 2 weeks free from pramipexole, you can do it!

I have quite low iron levels so I’ve been trying to boost them.

The worst part for me was a sudden decline in my mental health, what helped for me was taking myself out for a short 30 minutes walk whatever the weather. It distracts you and gives you a boost. Try not to worry, keep yourself occupied even if it’s just an audiobook and a lie down in bed.

In total I had 3 weeks off work, and I needed it. I was struggling at work due to the decline in my mental health, but it was the tiredness that made it worse.

The good news is that within a few days of stopping them my mental health improved, I just have a bit of anxiety left which my GP has prescribed a short course of beta blockers just today.

I’ve decided to have a break and see how bad my restless legs are once I get my iron levels up to a decent level, and then decide if I need to try a different medication.

Keep in touch with your GP with any problems. In the 3 weeks since I last saw my Doctor, her attitude towards the problems surrounding dopamine agonists has completely changed, after the NICE guidelines have changed. Whereas I felt dismissed and not quite believed 3 weeks ago, today she seemed very sympathetic and was asking lots of questions about my experience coming off them.

Good luck, you can do it!

[SueJohnson in reply to Kickabout]

You don't want to take a beta blocker unless it is propranolol as they make RLS worse.

If you need something for anxiety I suggest buspar.

[Kickabout in reply to SueJohnson]

It is propranolol that I’ve been given.

Thanks for the heads up!

[Country_Bumpkin87 in reply to SueJohnson]

After Covid caused asthma, I’m now not allowed beta blockers & haven’t been advised anything to help a worsening anxiety.

Tell me… the pharmacist was allowed to monitor originally when I went onto ropinirole to the max dose happy I wasn’t too affected- surely he is allowed to help with monitoring switching over?

He is keeping an eye on me after the high blood pressure incident- which thankfully is no longer excessively worryingly yet still above normal for me & putting me off getting back outside doing as constantly suffering from dizzy spells which started well before dropping any ropinirole xx

[SueJohnson in reply to Country_Bumpkin87]

For anxiety buspar is safe for RLS.

I know a lot about UK practices but am not familiar with pharmacists monitoring switching off ropinirole since I am in the US, but you can always ask him/her. Usually a doctor does this.

Are you saying the dizzy spells are from your elevated blood pressure. If so some medicines that are safe for high blood pressure are Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....

Time your medicines so that you take your thyroid medicine at least 4 hours from any medicines that contain aluminum, calcium (or calcium rich foods), iron and magnesium (or magnesium rich foods). DAs like pramipexole inhibit TSH secretion so brings down thyroid hormones. Conditions associated with hypothyroidism (high TSH) can make RLS worse so want to bring it up

[Gizmo1coco in reply to Kickabout]

Well done. Sorry to hear your mental health suffered in the process but great news you are improving. Can’t wait to get off this as I’ve been wanting to do it for a long time. My gp hasn’t got much knowledge in this but he will be doing his research. Thanks for your encouragement and response

[Steenslaw]

I’m in about 5 weeks on my tapering scheme. I started at 0.25 mg and I’m down to 0.0625. Just completed day 10 on that dose. I’m not sleeping much but hoping my symptoms will start to chill out soon. My mental health has taken a dive, but I keep reminding myself it’s temporary. I’m also on day 15 of no sugar (accept for fruit) as I found I was going nuts eating sweets. Hang in there!

[Birdland]

My advice is to go as slowly as you need to. Follow the schedule, but slow down on tapering if you need to. Everyone is different. Best of luck to you.