pramipexole withdrawal

[Gizmo1coco]

I started my withdrawal last Monday. So far it’s been a tough week. Walking the floor every night with very little sleep. Only relief I get is in a bath. Today I’m so low and emotional. Is this a side effect of the withdrawal or just due to exhaustion.

[Steenslaw]

I think for me, the low feeling was a combination of exhaustion and withdrawal. I say that because I would see mood improve on days that I hadn’t slept, my low feeling has been very inconsistent.

[Gizmo1coco in reply to Steenslaw]

Probably is a mixture of both. Not used to feeling this way but never experienced any sort of withdrawal before

[SueJohnson]

It's a known side effect of withdrawal.

[Gizmo1coco in reply to SueJohnson]

Thank you. Helps to know this is normal

[Joolsg]

Very common. Dopamine is the feel good/pleasure chemical & that's been stripped away. Plus exhaustion from zero sleep. It does settle.

[Gizmo1coco in reply to Joolsg]

Just worried that this is my first week how bad it will get when I decrease medication even more

[Joolsg in reply to Gizmo1coco]

It's better to know what to expect. The withdrawal schedule on RLS-UK website sets it out. It's under 'useful resources'.If you struggle- ask your GP for a low dose opioid to allow you to get some sleep.

And ensure serum ferritin is above 200ųg ideally.

[Gizmo1coco in reply to Joolsg]

Thank you for your reply. I have an appointment next eeek before I decrease more so I will talk to him then about prescribing a low dose opioid. My ferritin is 108

[Joolsg in reply to Gizmo1coco]

Sadly, as ferritin is above 100ųg- it's unlikely anyone will agree to an infusion. So keep taking ferrous bisglycinate every other night.

[Gizmo1coco in reply to Joolsg]

I have just asked my Gp today for a referral letter for to go private to see a neurologist. Going to do my research to see who is the best in the Glasgow area. Maybe if I go private they will be more inclined to give me an infusion. I will definitely get some ferrous bisglycinate

[Joolsg in reply to Gizmo1coco]

See Dr David Anderson at Queen Elizabeth hospital Glasgow.Another member has rated him highly.

BUT speak to his secretary first to ask if he arranges iron infusions AND will prescribe Buprenorphine.

And ask whether he's stopped prescribing dopamine agonists.

[Gizmo1coco in reply to Joolsg]

Dr David Anderson is NHS I want to go private to speed.things up. I will ask all these points you have made. Thank you

[SueJohnson in reply to Gizmo1coco]

But ask - he may see be willing to see you privately

[SueJohnson in reply to Gizmo1coco]

You can get a private iron infusion in Glascow at Https://glasgowprivateclinic.co.uk/wp-content/uploads/2024/10/GPC_IronInfusions_Doc2.pdf

Dr Colin 0'Leary is a neurologist in Glasgow that Scottie99 saw - no idea how satisfied he was nor what he said but you could message him to find out. Let me know what you find out if you do.

[ADP17 in reply to Joolsg]

But check transferrin and tibc. Ferritin can be increased by inflammation totally apart from iron levels. In the US, doctors give infusions if transferrin is less that 25% regardless of ferritin.

[Joolsg in reply to ADP17]

Same here - but only very knowledgeable doctors. The NHS will usually refuse if serum ferritin is above 100ųg. They're short of time & money & will tend to refuse RLS patients. There are around 3 or 4 UK hospitals that are aware of the link to low brain iron and that RLS patients often need levels above 300ųg before symptoms improve.

Postcode lottery.

[Fishhag in reply to Gizmo1coco]

I’m 6 weeks off Pramipexole and I don’t think I could have done it without low dose opioids. Beg your Dr for a prescription for something. Mine was methadone and it was a miracle. Take all these journal entries as a document of how opioids have helped us get off DA. Hang in there it does get better.

[Gizmo1coco in reply to Fishhag]

Well done. Wish I could fast forward to be off this completely. I feel I really need something to help with the withdrawals. Today was a better day. No as low but very achy all over. Thanks for you reply

[Sleepdodger]

Hang in there .. I'm living proof that it can be done. I'm now about 3 weeks off all meds after 20 plus years and I hope I can give you some hope. I had to taper very slowly. Slight reductions over some times a month before the next reduction. To be honest , I had bad nights but all in all it wasn't really worse than I experienced at intervals anyway.. o still have RLS. But honestly , it is better than when I was medicated.

[Gizmo1coco in reply to Sleepdodger]

Well done. Very encouraging. Did you take anything to help with the withdrawal?

[Sleepdodger in reply to Gizmo1coco]

Not really .. other than vitamin B12 and d.. lots of hot bathes . And I did gain weight .

[Bugsycat]

keep going you can do it.

The best advice I can give you is only reduce to the nest level when your body is ready. Sometimes it was 2 weeks - the lowest I ever did, yet another was 5/6 weeks. I even cut my tablet in half also

Mine was ropinarole but I couldn’t have done it without oxycodone.

I’m now DA free for5/6 weeks

I wish you luck. It’s not easy but it’s an amazing feeling when you’re off

[Gizmo1coco in reply to Bugsycat]

Thank you and well done. What strength of oxycodone were you on and have you stopped they now

[Bugsycat in reply to Gizmo1coco]

I think it was 30mg 1 twice daily.

Now on buprenorphine patches 20 mg and I’ve had no restless legs for last 3 weeks.

It’s a miracle

[Gizmo1coco in reply to Bugsycat]

Amazing

[Purpleyam in reply to Gizmo1coco]

Hello, could you share what dose of Pramipexole you are weaning off?

[LondonGir]

It has taken me 20 weeks to step down my ropinirole from 3.5mg a night to 0.0. Each step down was by 0.25 and I only moved down when my body adjusted. Some weeks were so very bad that I cut tablets to only step down by 0.125. Horrendous journey and introduced codeine half way through which helped greatly. Would take a 12.8 solphadeine max during the day. Then codeine (prescription from GP) at night. Had to increase codeine dosage at night for the last 6 weeks due to sleep deprivation.