concerned

[6236]

ok friends if you have read any of my post you know that I have been taking Ropinirole for over 20 years and after reading some of the information from the RLS foundation and here I realized I was augmenting. After much searching I found a great doctor that is going to take me through augmentation which I dread but I trust him to get me through it without suffering to much. But after reading some of the posts here I am scared and worried! The first thing that concerns me is I have read on here that being on Ropinirole as long as I have that the receptors may be damaged and gabapentin may not work and I have also read here that gabapentin just doesn’t work. My doctor has started me on 300mg 1xday and over time get me to 1800mg and in process begin coming off the ropinirole. What if the gabapentin doesn’t work?where is that going to leave me! I am not a baby but I do suffer from severe depression and anxiety and they have gotten worse since I started this journey to come off Ropinirole and at times a lot worse. Please tell me that if gabapentin does not work that there are other options because I cannot deal with RLS ! I’m sorry I know I sound like a baby but I’m 63 years old and I have other medical issues and I am just not sure I can handle RLS again. I know that opioids are the last option and I will use if necessary but I am getting a lot of resistance from family members about using opioids. Please I need some reassurance!!

[Madlegs1]

Tell them that it is well researched that low dose opioids do NOT lead to addiction..( unless you are an addictive personality)

I have been on 25 mg of hydrocodone for 8 years without problems.

There is totally unjustified hysteria among certain groups about opioids.

We don't ban cars, because a few people get killed by them?

Same for guns??

So-- my sincere advice is to relax.

Give the Gabapentin or Pregabalin plenty of time to work.

If it doesn't suit you ,then go for the low dose opioid route.

Good luck.

[ChrisColumbus]

Read this pinned post and the links from it if you haven't already done so:

healthunlocked.com/rlsuk/po...

[SueJohnson]

I agree with Madlegs and Chris Don't worry about something that hasn't happened. And remember that it won't work in any case until you are off ropinirole and your symptoms have settled. Worrying causes stress and stress makes RLS worse so you can help yourself by relaxing about this.

If that happens a low dose opioid is what you will need and it works. You have an excellent doctor so unlike many other doctors he will be willing to give you an opioid.

Hang in there! It will work and show the Mayo Algorithm to your family and the other articles from the link that Chris gave you. At the doses prescribed for RLS you won't get addicted.

[RiversW]

Hi Concerned,

Maybe my experience will help reassure you as far as opioids are concerned. I have had RLS for over 50 years and have been taking codeine for perhaps 30. Granted the baby sister in the opioid family, but nonetheless an opioid with potential for abuse. In all of the years I have been using codeine, I have never abused them and let me just add that if you shake my family tree, a lot of substance abusers will hit the ground. In my Mother's immediate family 4 out of 3 were alcoholic. My uncle killed himself with drink. In my immediate family, my brother could never quite kick his drug habit. So when I first turned to opioids for help, I was terrified of addiction, For 30 years, no issue.

Now, I am on the same path as you; withdrawing from a dopamine agonist because of augmentation. I tried to withdraw 5 years ago without a stronger medication to cushion the fall. It was a nightmare and unsuccessful. Fast forward to this morning and I am 4 days without a Neupro patch (Rotigotine) and 8 weeks of no codeine. This time with the help of a 20 mg Buprenorphine patch. Honestly the landing so far has not been rocky at all. Certainly not as horrible as my previous attempt. NOT EVEN CLOSE! Some Rls but not severe. Loss of sleep but I am getting 5 or 6 which for me is not bad. After time, hopefully my symptoms will dissipate even more and perhaps I can try pregabalin or gabapentin. But frankly if buprenorphine works I could stay with it. Very few side effects for me. As everyone will say in this community, this is my experience. Yours may be different. Maybe even better.

If you do not have addiction problems in your past you should have no issues.

Good luck and take care,

Rivers

[Joolsg]

There are other options. I take Buprenorphine. Opioids scare people, me included. I was terrified of starting opioids.However, Dr Winkelman set up the RLS opioid register to prove that low dose opioids for RLS do NOT cause addiction, or tolerance. Patients are screened and monitored. Previous drug abuse or a history of trauma/abuse usually precludes opioid prescription.

The Massachussetts register is showing that Patients stay on the same low dose for decades. Obviously they cause dependence, in the same way that you have been dependent on Ropinirole for 20 years.

Your doctor knows what he is doing. If gabapentin doesn't work for you, he will ensure you get the right medication/treatment.

massgeneral.org/rls-registry

[707twitcher]

I’m a buprenorphine user and fan. It enabled me to get off pramipexole fairly easily. I’ve only been off DAs for two months, and I’ve tried Pregabalin twice - both times seeming to make my RLS worse. So possibly the damaged dopamine receptors problem - but I might try again down the road. But my RLS has been doing great with just the buprenorphine. So my two cents worth is to ask for it when first starting your DA withdrawal - don’t suffer for months and view it as a last resort.

[TheDoDahMan]

There's a reason these regimes are called LOW-DOSE opioids. Your family members are reacting to scare stories about opioid overdoses. I've been on low-dose (10mg/day) methadone for 5 years and never even think about increasing my dosage. But the relief from RLS symptoms is truly blessed.

[Gemgel]

everyone’s system is different. But this is my story. I’m 73 yrs old and was on pram for 30 years. The doctors kept increasing the dose. I was up to 1.50 mg and the recommended maximum dose is .50. I had terrible augmentation along with some hallucinations. I took 8 months and weaned down very slowly. I did not introduce gaba until I was down to my final two weeks of pram. I believe it takes a couple weeks for gaba to start working. I started at 300 mg and that made me very dizzy so I took it down to 150 mg for a week. I then upped it to 300mg for about a week and am now taking 600 mg. So it has only been 3 weeks that I have been completely off of the pram and I slept 7 hrs last night. Crazy. This is what I am taking now.

8:00 pm - i take 600 mg of gaba

9:00 pm - 1 ml of a tincture that has THC:CBD:CBN ( I live in Oregon where this is legal) I also take a dropper full of a tincture called Kava (calming and stabilizing of the nervous system) this you can get anywhere

10:00 pm - my magnesium and vitamin B6

This still could be a work in progress but I can’t believe that I am no longer taking a dopamine agonist!

Good luck with your journey

[purple-flowers]

I have been in gabapentin now for 9 months having been on Pramipexole which was not working any more. I have been coming off of Pramipexole very very slowly and am now on 1 x .88 a day. I will halve that in a months time and hopefully by June or July I should be completely off of it. As far as Gabapentin is concerned I started on 300 mg for two weeks

, then 2 x 300 mg for a further two weeks. I now take 3 x 300 mg. I take one at 3pm and the other two at 6 pm. They work very well. If my RLS is particularly bad at night I take another one in the early hours. I hope this helps you?

[SueJohnson in reply to purple-flowers]

Unless you have symptoms during the day there is no reason to take it at 3 pm nor at 6 pm. Perhaps you have daytime symptoms from the pramipexole? Otherwise take 600 mg 1 to2 hours before bedtime and the 300 2 hours before that.

[purple-flowers in reply to SueJohnson]

I go to bed very early and I find this routine works for me! I do get symptoms during the day. They start around 4 pm.

[SueJohnson in reply to purple-flowers]

OK Understood,