Hi Sue.

[VENEER]

Kes Winder

24 Jul 2023, 12:27

to HealthUnlocked

Hi Sue Johnson,

I would like to share a recent visit to my sleep clinic doctor who's dealing with my RLS condition.

He agreed that due to my symptoms aurgmentation is a strong possibility therefore he has prescribed Pregabalin tablets in 50mg to be taken one before bed time and to come off Ropinorle. He did not seem to reassure me that this would be a solution to reducing my symptoms and am now concerned that if they do not work I have a follow up appt in 3 months time with him.

Question.

1. He seemed to suggest taking pregabalin would take over the Ropinorole within a couple of days?

2. What would you advise is the appropriate dosage I should take if 50mg is not enough?

I hope you don't mind but all our comunications thats relevant to my condition I have left details for his perusal.

Any help as usual is much appreciated.

Kindest regards

Veneer.

Ps

Also having started Pregabalin, I take 2 50mg in the morning and two in the evening either amounts seem to be working so I was told to try 300mg a day but this still is not working please advise if you can.

[Joolsg]

Go back to your GP and tell him withdrawal from Ropinirole is hellish; most experts compare it to coming off heroin.Ask GP to prescibe 0.25mg or 0.5mg pills so you can reduce more easily without cutting the 2mg pills.

There are 2 schools of thought on reduction.

Johns Hopkins, a leading RLS Centre, prefers a fast 3 week reduction with NO meds to help withdrawal and then a 2 week totally drug free period. You have to be extremely fit and healthy to survive such an ordeal. It is HELLISH.

Most of the other top experts suggest a slow taper with the help of low dose opioids like codeine, tramadol or oxycodone to settle the severe reduction with each dose drop.

I would go for the slow reduction.

Drop 0.25mg every 2 weeks. Take the low dose opioid to settle the severe RLS at each dose drop.

Stay on 50mg pregabalin for now as it doesn't help until around 2 weeks after your last dose of Ropinirole. Start to increase pregabalin 3 weeks before your last dose of Ropinirole and up the dose to 150mg. Stay on that dose for 3 weeks. Only then increase above 150mg if it doesn't cover RLS. Take at night only.

Show your GP the RLS UK website, particularly the sections on iron levels medications and the medication chart.

Your GP needs to do full panel, fasting blood tests to ensure your serum iron is above 60 and serum ferritin above 100, preferably 200. That will help reduce augmentation, withdrawal symptoms and can resolve RLS for the majority.

Withdrawal is difficult but don't give up as your RLS will improve once off Ropinirole.

[VENEER in reply to Joolsg]

Thanks for the detailed response. I'm off ropinirole now and the Pregabalin is not working?

[Madlegs1 in reply to VENEER]

You will be suffering withdrawals for at least a few weeks from the Rop.Pregabalin won't mask that.

[VENEER in reply to Madlegs1]

So what should I do, I have a serious dizziness and my balance is not normal, woke up with blood out my nose dried out on my lip.

[Madlegs1 in reply to VENEER]

Take Sue's advice. Go back to your doctor. Explain how you are feeling.

You need low dose opioid such as Tramadol to get you over this hump.

Or go back on Rop and taper down more slowly.

Let your body tell you how fast to go down.

[Joolsg in reply to VENEER]

What? You dropped 4mg of Ropinirole overnight??That is dangerous.

Go back on 2mg tonight and stay on it for a week.

Then start to taper down slowly by 0.25mg every 2 weeks.

Pregabalin causes dizziness and eye problems for the first 2 months. That's why you only take it at night. The dizziness wears off.

Pregabalin DOES NOT work for RLS until around 3 weeks after the last dose of Ropinirole.

Ropinirole is an incredibly powerful drug that affects your dopamine receptors. Withdrawal causes all your dopamine receptors to scream out. That's why Withdrawal is so difficult. Slow down the withdrawal.

Take Pregabalin at night only and stick to 50/75mg until you're nearly at the end of Ropinirole withdrawal. Then in increase to 150mg BUT it won't help the RLS until around 3 weeks after the last dose of Ropinirole.

That's why most patients will need a low dose opioid or medical cannabis to settle the symptoms.

Most doctors are completely unawa how hellish Withdrawal from dopamine agonists can be, so take this opportunity to educate your doctor. Film or write down your withdrawal over a few weeks. It will help your GP understand the severity of the disease.

[VENEER in reply to Joolsg]

That's great thank you. It's good to know there's somebody there to help and who responds quickly.

[SueJohnson]

Obviously taking pregabalin will not take over the Ropinirole within a couple of days. I assume pregabalin has not caused the low libido you suffered with gabapentin. It takes 3 weeks for pregabalin to be fully effective and it is not really going to be effective until you are off ropinirole for several weeks and your symptoms have settled. For night time RLS take it 1 to 2 hours before bedtime not at bedtime.

The dizziness and balance problems can be either a result of the pregabalin or your withdrawal from ropinirole. Did you have it on the lower dose of pregabalin? Since it takes 3 weeks to be fully effective and it may be causing the dizziness, for now I would only take 100 mg twice a day.

I agree with Madlegs1 and Joolsg. I would go back to your original ropinirole dose. If your dizziness disappears then it is likely the withdrawal was the problem so can increase the pregabalin to 150 twice a day. Wait a day and see if the dizziness returns. If not then you can start the withdrawal again. Reduce by 25 mg every two weeks. 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.

Yes, as suggested, you will need a low dose opioid to help you.

[VENEER in reply to SueJohnson]

Thanks for that detail and you time to respond. I'm not in a good place at the moment.

[BarnGir1 in reply to VENEER]

You have lots of support here. It is definitely a roller coaster ride but don't give up. This long journey is full of ups and downs but it is worth the effort.

[VENEER in reply to BarnGir1]

👍

[Nikos64]

I’ve gone thru pramipexole withdrawal and I too can attest it is hellish!!!! I was fortunate enough to have a knowledgeable doctor that prescribed Tramadol and slow tapering of the pramipexole. So, I’m only going to reinforce the sound advice of Sue Johnson and Joolsg. I also would like to add the following based on my experience …

Pregabalin was a bad drug for me. I have obstructive sleep apnea and because pregabalin causes marked weight gain (in my case +20lb) it made my sleep apnea severe and it alarmed my wife. So, please be aware of pregabalin.

Also, Tramadol worked great for me for about 8 years but then it caused augmentation and serious side effects (I’d doze off for a few seconds and wake up). So, you gotta watch out for that.

Oxycodone is hard to get but probably more effective and may get you thru the difficult period of ropinirole withdrawal.

I wish you courage and restfulness. Please stay upbeat, you will get over it.

As Churchill said : “When you’re going thru hell, keep going!”

[VENEER in reply to Nikos64]

That's most informative detail which I appreciate you recommendations.Thank you.

[Simkin]

I agree with Nikos 64. Roprinole did not agree with me so I was put on pramipexole.Withdrawal as Nikos64 says from pramipexole also hellish, just like heroin Withdrawal I should imagine.