How long for the argumentation effects to reset?

[KatieRidgeway]

Hi everyone,

I have a question regarding argumentation and how quickly your body resets itself after coming off ropinirole.

I’ve been on various RLS meds over the past 10 years….ropinirole being by far the most effective. In that time, I’ve augmented twice! I managed to get off ropinirole in favor of pregabalin, however both times I ended up back on ropinirole after a few months, as the pregabalin ceased working.

My question to all you lovely people is:

How long does it take your body to reset itself after coming off ropinirole? Weeks/month/years/never?

Is it possible to continue this cycle of taking ropinirole up until the point of noticeable augmentation….then coming off it for a few weeks/months until my body has reset itself (using pregabalin to help deal with the withdrawal)?

I’m desperate for answers, as ropinirole is the only medication I’ve tried which actually works, but obviously due to argumentation, I can’t simply stay on it indefinitely.

Thanks in advance for your advice.

Katie xx

[LotteM]

Nobody knows! Some people, including scientists, fear augmentation causes permanent damage. But if that is true that can also be due to 'out of control' augmentation. By that I mean that people as per advice of their doctors kept increasing the dose of their DA when the experienced signs of augmentation. But little is known and researched.

Personally, I think you should remain vigilant. If this regime works for you, keep at it. But it may be wise to keep notes as to when you take the ropinirole, how much and how long. If you find the time that you can take it shortens before signs of augmentation appear, you may want to start thinking of alternatives to overtide your standard in-between time (time without ropinirole) and/or find a more permanent non-DA replacement for the ropinirole.

As to your question in the title of your post: we are all different AND we all have different histories on the DA we have take, that is dose and length of time we took the DA, as well as severity and presentation of RLS symptoms.

[KatieRidgeway in reply to LotteM]

Thanks for you reply LotteM….I really appreciate it.

I was not aware that augmentation could cause permanent damage….that’s something I need to seriously consider from now on. Luckily, I’ve never had the real ‘out of control’ augmentation you described, but I have augmented so much so that I worked my way up to the max advised limit for ropinirole.

I’ve asked my neurologist about opioids (only as a means for coming off ropinirole), but was given a firm No! I’ve had limited success with pregabalin, so would love to find a different drug to help keep me off the DA’s. I’ll keep searching.

Thanks again for your advice.

Katie xx

[Hidden in reply to KatieRidgeway]

Hi Katie, just another possible option. Usually the first thing that happens with a DA is it starts to fail. Full blown augmentation usually occurs after that, but ALSO after increasing the dose.

To avoid augmentation then, if the DA starts to fail, do NOT increase the dose, certainly not up to the max. Reduce it, if only a little.

You can also combine the DA and pregabalin which may work.

[KatieRidgeway in reply to Hidden]

Thanks for your advice Manerva,

I am extremely conscious not to increase my dose of DA, however it’s difficult in the middle of the night when my symptoms are relentlessly.

I’ve had a few really bad nights recently, where I was restless all over my body, especially in my arms. I didn’t sleep at all for 3 night in a row! I’ve therefore started back on pregabalin last night ….max dose combined with .5mg of ropinirole. I’ll stay at the max dose of pregabalin, just until I can get off ropinirole, then I’ll reduce my pregabalin dose as low as I can tolerate.

Unfortunately pregabalin only seems to work for a few month, before I have to up the dose. I’m reluctant to increase the dose too much, therefore I end up back on ropinirole. It’s a vicious circle!!!

I was hoping my neurologist would prescribe opioids for me to try. I here they’re very effective for severe chronic RLS (which is what I have). I would love to know that I have other options which work for me. I’ll ask her again the next time I see her.

Katie xx

[Hidden in reply to KatieRidgeway]

The few bad nights you've had recently show classic signs of augmentation, hence reducing the ropinirole will nelp.

Of course the best option is an opiate, the combination I suggested was based on you not being able to get one.

You'll have to push for one.

[KatieRidgeway in reply to Hidden]

Have you tried and opiate? If so, which type? And how well did it work for you?

I’ll see how I get on and if I have trouble with this combination, I’ll put a little pressure on my neurologist. Xx

[Hidden in reply to KatieRidgeway]

I've never had to use an opiate.

The one licensed for RLS in the UK is targinact

Methadone can also be used, but recently there has been a lot of interest in buprenorphine (Temgesic).

[Joolsg in reply to KatieRidgeway]

Katie, I suggest you change neurologists. Opioids at low dose are safe and effective for RLS and essential when the DAs and pregabalin have failed. There are neurologists who are better informed and Kaarina keeps a list.In the meantime, send your neurologist this study, and consider joining the campaign to educate doctors and neurologists by writing letters. See the pinned post.

massgeneral.org/rls-registry

[KatieRidgeway in reply to Joolsg]

Thanks for that info Joolsg.

I will definitely print it up and bring it with me to my next neurologist appointment.

Even though I’ve alway been given a firm No whenever I inquired about opioids….I’ll go prepared and be more forceful next time.

Thanks again. Katie

[DerAusgewanderte]

Relentless nights were for me the point when I started coming off from pramipexole. I’m on my second month now with 0 prescriptions and my body is coming back to normal. I was on pramipexole for 5-7 years. My RLS is gone and I’m still trying to get a constant and regular sleep schedule. I’m getting a blood test next week to see if I need any iron supplements going forward.

[Covenant1962 in reply to DerAusgewanderte]

Hi DerAusgerwanderte, when you say your RLS has gone? Do you mean you’re cured?

[DerAusgewanderte in reply to Covenant1962]

I am still confused myself. The RLS is not completely gone, but it is barely there. I can feel them when I go to bed maybe 2 out of 7 nights. But when I turn around or stretch my legs they go away and I can sleep. It's almost like phantom RLS. I have not been forced to sit in the same seat for 4-5 hours, e.g. on a flight.

That really was the only reason I started taking pramipexole in the beginning.

[Covenant1962 in reply to DerAusgewanderte]

Any thoughts on why you’re now symptom free?

[DerAusgewanderte in reply to Covenant1962]

I think that I'm currently feeling symptom free, but in fact I am not. I would describe this as thresholding with the augmentation. The symptoms that are left now are way way below the set threshold while on pramipexole. It will be just a matter of time when that little that's left will bother me I think - maybe a couple months, maybe longer, when my adjusted threshold will come back down to normal levels - all a wild guess for me.

[KatieRidgeway]

That’s exactly what keeps happening to me. Whenever I manage to get off ropinirole, I feel like I’m almost symptom free, but I’ve come to realize that that’s only in comparison to my symptoms while augmenting! Then after a short while I’m back to square one again😢. I’m hoping an opiate will break that vicious cycle.

Katie