Update to current status

[Earlyriser13]

Hi everyone,

Since joining this group I have learned a great deal about this debilitating condition that has been a part of my life for the best part of 20 years- thanks to all contributors.

As an update, I thought I would share my current status.

I was on 2mg’s ropinirole with very variable results from early onset of symptoms to early waking. Once in bed, arms were the main issue. Excessive eating was/ is also a bit of a problem. This has gradually got worse over the last year or so.

From this group’s input, augmentation appeared to be the issue.

I had been referred to a neurologist in the past with whom I had consulted with via email after my initial consultation. Even though it had been a few years since I had last communicated with him, he agreed to continue to support me this way (an actual face to face consult would take many months to arrange).

Once my neurologist was aware of my current situation, he agreed that augmentation was the issue. I am now reducing my DA by 0.25mg’s a night one week at a time (now on 1.5mg’s)

Withdrawal is not pleasant but I feel it should be better in the long term. Tramadol 50mg’s will also be prescribed to alleviate this and perhaps be continued moving forward if I respond well to it. Pregabalin in combination or on its own is also an option.

So that’s me currently, restless as hell in the evening’s, bed sometimes by about 1230 then awake by 3 or 4. I’m 63, very active (cycle loads of miles) have no other health issue. Very balanced diet.

I do dread the approach of night time and empathise with each and every one of my fellow sufferers out there. Like everyone, I continue to search for something to alleviate this debilitating condition.

Dave

[Joolsg]

Hi Dave,

It’s great that you have a sympathetic GP.

The only comment I would maje is that reducing by 0.25mg is too fast. The latest recommendations from experts in the USA is that the minimum withdrawal period should be 3months.

I withdrew too quickly and had a really traumatic time so maybe consider going more slowly?

Tramadol was not as helpful as I’d hoped and I had to use illegal cannabis during the worst nights.

I’m delighted your GP is on side and has prescribed alternative meds.

Good luck.

[LotteM]

That is great to hear, Dave. It appears you have a fairly knowledgeable neurologist. Where is she/he based? Maybe other can benefit.

I di have to agree with Joolsg that coming down with 0.25mg a weeks seems a bit too fast. It may 'work' now, but most likely will give you huge agony further down the line. If the increased symptoms due to your first 0.25mg reduction settle after a few days or a week, then enjoy and wait another few days before the next reduction. As Jools say, go slow. The smallest ropinirole pills are 0.25mg, but from my experience it is fairly easy to cut these in half. My pharmacy gave me a pill cutter, but a sharp knife may work equally well. Cutting into quarters when you go below the 0.50mg may be useful. Manerva has come off the pramipexole going very slowly and experienced few withdrawal symptoms. However, we are all different, and if you've been on the ropinirole for a long time, it most likely will be harder.

Many contributors to this forum have been in your shoes. So we understand what you're about to do and how it will be. Feel free to moan or complain if you feel the need. We're here to support you. And please keep in mind that it will get better a while after you final dose. There IS light at te end of the tunnel. The RLS will most likely not disappear, bit it will be less severe than it is now. Keep going! But go slow. And play it by ear. These are the rules of thumb. And start the pregabalin well before your planned last dose of ropinirole; it takes 3-4 weeks to become effective. And effectiveness can only really be assessed when withdrawal symptoms have eased.

[Hidden]

Hi Dave, I'm glad to hear yout neurologist has recognised one of your issues, augmentation.

I agree with Jools in that it seems you are withdrawing too fast from the ropinirole and this will mean your withdrawal symptoms may be worse than needs to be. Reducing the dose every 3 to 4 weeks may be better.

Great also that tramadol has been presribed at least to help with withdrawals.

As regards pregabalin, there is some contradictory information about whether this can "work" whist still taking a DA.

Since some sources recommend this combination in some cases it seems pregabalin can work alongside a DA. What might confuse the issue is if you're suffering augmentation or DA withdrawals. In which case, you won't really be able to tell if pregabalin will work for you until you stop ropinirole altogether. If you are going to try it, then it's a matter of when.

I believe it used to be at one time that when switching RLS meds a "washout" period was recommended after stopping one med before starting the other. This was to see if somehow the RLS had disappeared. Since that's unlikely and during any such period people may have uncontrolled symptoms To cut a long story short, since pregab takes about a month to start working it might be a good udea to start takung it before stopping the DA, at least 4 weeks.

One other thing is that your neurologist has acknowledged augmentation, I wonder if it the possibility of you having an Impulse Control Disorder (ICD) was discussed. Another complication of taking a DA.

This is significant since having an ICD can put you at risk of developing DAWS, i.e. even worse withdrawal effects. In which case further reason for slowing down your withdrawal.