DA withdrawal progress

[Louless9]

Hi

F58 UK

Update on withdrawing from Ropinirole tablets.

I have had RLS for over 10 yrs and tried Pramipexol, then changed to Ropinirole. After visiting consultant they recommended Gabapentin. After advice from this forum I am reducing my Ropinirole. My Ropinirole dose was 1.5mg 3 x day. Gabapentin 100mg am. Pm and 300mg at night.

Currently taking Ropinirole 0.5mg pm and 1 mg at night. Gabapentin 100mg afternoon and 300mg at night. I have been reducing Ropinirole by 0.5mg a week.

Up until now it’s not been too bad, it has been 6 weeks and now I have RLS all the time of varying severity depending on the time of day. When it starts to get intolerable I take over the counter cocodamol tablets. With taking 300mg Gabapentin at night my sleep has increased from an average of 4 hours a night to 5 hours a night.

I still wake up at 5am and can’t go back to sleep and feel exhausted in the morning, the drowsiness doesn’t wear off until mid morning. I stopped taking the morning Gabapentin due to the drowsiness. I am also eating for England and have put at least a stone (14 pounds) of weight on, I was already obese

I am still living in hope that the Gabapentin will be my saviour after discontinuing the DA’s but am concerned that if I have to increase the Gabapentin dose I’ll be a walking zombie which is what I was already.

I still have to wait 2 months before returning to the consultant and I am praying that the condition will have settled by then as this was not the course of treatment they advised. I am still waiting for my appointment for a blood test to see what my ferritin levels are (getting any kind of appointment is a nightmare in rural Oxfordshire).

My mental health is still suffering along with my work and am on reduced duties and responsibilities.

Please be gentle. I just need to know there is light at the end of the tunnel.

Thanks

[Madlegs1]

Yes--- you will get through this.

And you will look back on this period of your life with pride.

What an achievement!!!👍💚

It will not be a pretty journey, it will be a tough road.

But keep to the advice you will get here, and you will succeed.

All the best.💚

[SueJohnson]

The reason you have increased symptoms is it gets worse as you get further down. My usual advice is to reduce by only .25 mg every 2 weeks and wait until the symptoms settle before making the next reduction. Since you are suffering now I suggest you go back up to 1.75 mg, let the symptoms settle and then reduce as I suggested. There is no hurry and no reason to suffer more than you need to. Congratulations for getting down this far and having an easy time up until now.

[Joolsg]

Yes. It definitely gets better once you're off Ropinirole. Stay strong. You will feel so much better once you're off dopamine agonists.Gabapentin doesn't really help much at all while you're in withdrawal, but it kicks in around 3 weeks after the last dose of Ropinirole.

And you don't take it in the day for RLS. You take at night only, in 600mg doses 2 hours apart.

Have a detailed chat with your consultant about switching to a low dose, long half life opioid. If you are eating more on Gabapentin and are obese, an opioid may well be a better, safer option.

Buprenorphine or methadone at low dose are highly effective and don't cause the weight gain that Gabapentin and pregabalin do.

[ChrisColumbus]

Further to Jools' point about low dose opioids, if you haven't already seen the following pinned post it would be worth a read (and possibly worth printing out) before you talk to a doctor about it.

healthunlocked.com/rlsuk/po...

Few GPs understand that *low dose* opioids are both effective and safe for RLS. In some places they can't or won't prescribe them. If they think about opioids at all it's in the context of much higher doses - e.g. for pain control.

But if you follow the second link in point 2, that takes you to a chart ('Table 4') on recommended opioid doses for RLS which are much lower.

[SueJohnson]

If you weren't gaining weight while you were just on the ropinirole, it is probably the gabapentin. When you are off ropinirole if you can't get a low dose opioid you might want to try pregabalin. Although it is basically the same drug as gabapentin except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other.

[RLSAndy]

Hey - im in a similar position im down to .5 rop from 4 earlier this year. Im waking at 5am too some nights i get 6 hours others not, im a busy chef and body-build 5 times a week and fight to keep my hobbies and job going. I take 450ml pregabalin and to pray that better days are ahead and once off the DA i will get some normality back. Stay strong ❤️

[Coeso]

I stopped DA's gradually with the help of tramadol and started gabapentin. I got up to 1500mgs starting at 5pm then 7 and then 9. It hasn't worked on its own only during the day when I have no rls whatsoever. I still take 50mgs tramadol to get through the night. I'm worried that it will augment, let's see

[Cocosmum]

I can only give my own experience. I take 56mg of iron tablets at 4pm on empty stomach, 2 pramipexole at 7pm and 2 30/500 cocodamol at 9pm. I had one bout of rls in December and one since. I'm certain it is the iron that helps. I've read very negative reviews about pramipexnoe but, as, fingers crossed, I'm doing ok, I see no point in reducing any of the medication in my routine. Hope this information will help you.

[SueJohnson in reply to Cocosmum]

It's a lot easier to come off pramipexole when you aren't suffering from augmentation.

[Louless9 in reply to Cocosmum]

Pramipexole was the first drug I was put on over 10 years ago and was on it for 8 years gradually increasing until it didn't work any more. It was hell reducing that before starting Ropinirole, I had to take a higher dose for the ropinirole to be effective and its only been 2 years until refractory augmentation set in. That's why I have been so reluctant to withdraw from the DA again and I totally understand you not wanting to, anything is better than having RLS.

Saying that, I know what to expect though, so I am going to persist and get off the ropinirole and follow the advice here.

I read about DAWS (thank you to whoever posted about that) it has helped me understand how I have been feeling and perhaps I am not going mad! The last few days although I'm feeling tired my brain and thoughts now feel clearer, it just suddenly seems to have got better!

There is still some way to go and I shall persevere and will start to reduce more cautiously but I will do it, I have done it before.

Thank you all for your continued support xx

[Sahiljain2291]

i tell you the best best way.. walk on grass bare feet minimum 30 minutes, or just stand or sit if you cant walk much.. you will be relived 80 percent..

I’m myself doing so..

[Louless9 in reply to Sahiljain2291]

Sadly my body doesn't like the cold and damp, which it is in the UK at the moment

[SueJohnson in reply to Louless9]

Tou should be in the US - we are having a hear wave.😀