Transitioning from Ropinerole & Gabapentin to Pregabalin

[Jackiep1216]

Hi, I just went to the new designated Quality Care Center at UPMC in Pittsburgh. The Dr. put me on 25mg of Pregabalin 3xs a day. 25mg at 5:00pm, 9:00pm at 12:00 am. I am in week 3 and I am averaging about 3- 4 hrs of sleep because my RLS kicks in. It kicks in around 10 pm as well. Is this from withdrawal from the ropinerole which I am reducing slowly ? Am I taking the Pregabalin at the right times at the right dose for RLS?

[SueJohnson]

It could certainly be from the withdrawal from ropinirole. In any case the pregabalin won't help much while you are still on ropinirole. Who is your new doctor?

[Jackiep1216 in reply to SueJohnson]

Dr. Avinash Aggarwal.

[SueJohnson in reply to Jackiep1216]

Then you are in excellent hands

[Jackiep1216]

I like her! I traveled 5 hrs to see her. It's just wanted this groups' expertise! 😊

[Joolsg]

As you reduce Ropinirole, the RLS dramatically increases in severity and the pregabalin doesn't stop the withdrawal symptoms. You'll have many sleepless nights.

Have a look at the withdrawal schedule on the RLS-UK website, under 'Useful resources' & it sets out what to expect.

You will have a tough time, BUT it's worth it. Symptoms start to settle about a month after the last dose of Ropinirole.

rls-uk.org/useful-resources

The pregabalin starts to kick in slowly once completely off Ropinirole.

[Jackiep1216 in reply to Joolsg]

Thank you guys!

[LotteM]

Just wondering… Why did your doctor prescribe the pregabalin in doses divided over the day, and not concentrated in the evening? What did she tell you to expect from this change of medicines? Good to hear you are withdrawing sliwly from the ropinerole. Slow down further if it is too tough, or ask for additional (weak) opioid-like med like tramadol temporarily / as needed for the withdrawal period. You will be better afterwards. Hold on 💪🏻

[Jackiep1216 in reply to LotteM]

Thank you. My RLS has been starting these days around 6:00 and then around 10:00. I think she staggered them because of that, but I'm not sure. They definitely aren't helping right now though that is why I posed the question.

[LotteM in reply to Jackiep1216]

Hopefully the daytime symptoms will soon disappear with ongoing reduction of your ropinerole dose 🤞🏻

[SueJohnson in reply to LotteM]

They are all at night. The 12 am one is midnight. I almost thought the same thing.

[milly-22]

I started the Pregabalin only shortly before I came off the Ropinirole. You will need another month to 6 weeks being off the Ropinirole before the RLS lessens. However I am on 300 mg of Pregablin and take this in the evening with Co codomal to top up in the night. This just about has the RLS under control.

[Marley7]

Hi. I have recently come off ropinerole and started pregabalin.

I would class my restless legs as having been severe when I was on ropinerole, but once I began the withdrawal process, my symptoms were off the chart. It was a very difficult time for me and I wasn't sure I'd get through it.

My doctor has now prescribed me 150mg of pregabalin to be taken an hour or so before bedtime but I'm only taking 100mg as my symptoms are now so mild.

My guess is you are experiencing the same withdrawals I did. Stick with it. It gets better.

Ropinerole is a nasty drug (the words of my current doctor)

[Jackiep1216]

How do you make the withdrawal symptoms bearable? Not sure I can last that long. I got 1 hr of sleep the past two days and I still have 3 weeks of weaning to go. I also have a cornea transplant scheduled for 9/24 and you have to lay with your head back for a week after the surgery. I'm nervous that I won't be able to...

[SueJohnson in reply to Jackiep1216]

Ask Dr Aggarwal for a low dose opioid preferably buprenorphine or methadone to help out your withdrawal. The opioid could also help with keeping your head back or temporarily increase the ropinirole.

[Jackiep1216 in reply to SueJohnson]

I asked her and she again told me to find someone local to prescribe the opiates and would not recommend increasing the ropinerale to help me get through this until I find a local doctor to help with the withdrawal symptoms. How is that quality care and now what am I supposed to do? The lack of empathy is staggering.

[SueJohnson in reply to Jackiep1216]

It definitely isn't quality care. I am really surprised. Did you ever try Dr. Jenie George?

[Jackiep1216 in reply to SueJohnson]

I do have an appointment scheduled with her in October. I'm trying to find a pain management doctor before that.

[SueJohnson in reply to Jackiep1216]

You will definitely need extra ropinirole for your cornea transplant and week after. Will Dr Aggarwal at least prescribe that if you can't find a pain management doctor before that?

If not you might want to explain things to the doctor doing your corneal transplant and maybe s/he might prescribe one or the other.

[Jackiep1216 in reply to SueJohnson]

I asked her I should re-up my dosage of Ropinerole on order to reduce symptoms until I find a pain management doc. Her response was "I don't recommend it" and that was it...so I am guessing not. I have a message into my cornea surgeon to see what he wants me to do. Thanks for listening. It's really the total lack of empathy from the doctor that bothers me the most. You guys have been so helpful. Thank you!

[violetta254]

Because of your previous ropinirole use, the pregabalin may never help. It did not help me at even after withdrawal from the DA. The only thing that works is opioids, currently methadone. You at least need some opioids to get through the withdrawal, have you asked?

[Jackiep1216 in reply to violetta254]

I actually asked for a low dose opiod instead of the Pregabalin but she wanted me to try Pregabalin first. If she does agree to put me on an opiod, she said I need to find a pain management physician near me to monitor my opiod use since she is over 5 hrs away. I'll follow up with her on Monday.

[violetta254 in reply to Jackiep1216]

Maybe it is different in your state but my neurologist is 8 hours away. Telehealth covers it and just needs to be in the same state. You shouldn’t need a pain management doctor since it’s not for pain. Some doctors just don’t want to prescribe opioids. But at a center for excellence?!…

[SueJohnson in reply to violetta254]

Perhaps it is required in pennslyvania

[Jackiep1216 in reply to violetta254]

Yes it is. However, she just responded to tell me I should fine a pain management doctor locally as see if they will prescribe and monitor it, she said especially because it can be an issue if you are taking Pregabalin at the same time. I serioulsy doubt some doctor at a pain management group will just precribe me opiates. Yes they are supposed to be a Quality Care Center. This s very frustrating.

[violetta254 in reply to Jackiep1216]

and your doc should know that gaba and pregabalin dont work well if you are still weaning off a DA. See if they can just give you a short term opioid to get over the worst.

[Jackiep1216 in reply to violetta254]

Thank you. I'm going to ask.

[violetta254 in reply to Jackiep1216]

I would report this problem to the RLS website that certifies the Quality Care Centers. This is not what is supposed to happen at a Quality Care Center. Since they are newly certified, I think you would get a response. I doubt a pain management clinic is going to give you opioids long term for RLS. I had this problem with one of my neurologists who wouldn't prescribe opioids even though nothing else was working. He wanted me to go to my PCP to get them. I had to change doctors.

[Jackiep1216 in reply to violetta254]

I think she was thinking only short term while I'm going through withdrawal. I only met her once and maybe we are just not communicating well, I don't know. I just know I'm having a rough time at night and I feel like no one really cares. It's not our fault doctor's put us on these meds and we are left just to suffer through it. I don't get it and I am disheartened. I have a cornea transplant in 4 weeks and will need to lay with my head back the first week and I will still be going through withdrawal and I just don't see it going well at all.

[Pompeylad]

Not sure. I'm on 100mg pregabalin in the morning and a hundred milligrams in the evening. I can only say that my RSL pain disappeared immediately as soon as I started on the medication. Good luck.