I’ve been struggling to manage my restless legs. Was on 300 mg Pregabalin for fibromyalgia and 1 mg clonazepam for RLS for about 6 years and then I decided to try to come off of all prescription meds. I didn’t know at the time that Pregabalin was helping with my RLS. I wasn’t suffering during that time from RLS unless I had a trigger (versed during eye surgery, benedryl for allergies, phenergan for nausea, etc.).
Tapered off of Pregabalin with the help of my then-primary care doctor until I got to 25 mg. My RLS kicked in and so we decided I could go back to 50 mg where the RLS wasn’t bothering me (stayed on 50 mg). However, over the course of the next 1 to 1 and 1/2 years, the clonazepam stopped working as well and I got to the point of taking 2-4 mg at night. That scared me so seven months ago I saw a specialist who prescribed ropinerole.
The 1/4 mg he prescribed wasn’t helping so I increased to 1 mg. That took care of the movement part of RLS but I had nausea, stomach pain, physical agitation for a couple of hours after taking it, and insomnia. The side effects of the ropinerole have continued to be really bad, as well as only sleeping 2 hours a night was terrible and not sustainable.
About three weeks ago, out of desperation (can’t get in to see the specialist until mid-November), I took some old Pregabalin I had which took me from 50 mg to 200 mg a night. That has helped tremendously. The specialist was willing to prescribe that much for me after he read my message to his office about my lack of sleep.
So now I’m on 200 mg Pregabalin, 3/8 clonazepam (I tapered down on my own without any help and it was really hard), and 1/2 mg ropinerole.
My plan is to decrease the ropinerole by 1/8 mg each week until I’m off. I do not want to be on it at all. Then I’m going to ask the specialist to switch me from clonazepam to diazepam and then decrease by 2 mg per week per the Ashton manual for withdrawal from benzos.
I’ll ask the specialist about Pregabalin vs. gabapentin. My current primary said she will never prescribe Pregabalin but is willing to prescribe gabapentin if I want to take that. However, she told me that ALL of her RLS patients do very well with iron and ropinerole and none have had bad side effects or augmentation on ropinerole. I question her knowledge as I have read Johns Hopkins’ and Mayo Clinic’s websites where it is stated that first-line Tx of RLS is iron and gabapentin or Pregabalin.
So does anyone have any guidance for me? If it weren’t for sites like this and the Hopkins’ and Mayo Clinic’s websites, I would be at the mercy of doctors who don’t seem to know that first-line Tx is no longer dopamine agonists.
I don’t know how to replace the three meds with only Pregabalin or gabapentin.
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Abby2525
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You are doing great. The usual reduction schedule for ropinirole is .25 mg every 2 weeks. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Gabapentin and pregabalin are basically the same drug, but if your specialist will continue to prescribe it there is no reason to switch. If you do switch to gabapentin, the equivalent amount to 200 mg pregabalin is 1200 mg. The disadvantage to gabapentin is it is not well absorbed above 600 mg so you need to take 600 mg 1 to 2 hours before bedtime and then 600 mg 4 hours before bedtime. If you need more than 1200 mg you would take the additional 6 hours before bedtime. For pregabalin you can take it all at one time 1 to 2 hours before bedtime. If you take magnesium, take it at least 3 hours before gabapentin or pregabalin as it interferes with the absorption of them. Have you had your ferritin tested? If so what was it? Increasing it to 100 or more reduces symptoms in 60% of people. I'm not sure why you want to switch from clonazepam to diazepam and reduce from there. Why not just reduce from clonazepam?
Sue, thank you for responding! The reason I want to switch to diazepam is that it’s very hard to cut a clonazepam tablet in very small portions. Dr. Ashton of the UK wrote a book about how to taper from benzos in a very manageable way. I’ve been on the clonazepam for not just these past eight years but about six years before that. So she recommends switching to a shorter-acting benzo that is easier to titrate.
Yes, I had my ferritin level tested. After two iron infusions, my level was 159 so my primary doctor told me to go back on oral supplements. I ordered a heme iron supplement. I am vitamin D deficient so I am taking that as well as folate and B12.
Actually I was wrong in what I said. I had been on .5 mg clonazepam. You can get .125 tablets and I reduced by .125 mg every 2 weeks. They are called orally disintegrating tablets.
Thank you, Sue. I’ll ask my specialist when I see him in November. Meanwhile, I cut the ropinerole tablet in half and then cut the half into pieces and took approximately 3/8 mg last night. So far, so good, but I also took a hemp Delta 8 gummy last night. That helped, I think.
Abby and Sue, I am a newbie here. I am wondering if you had weight gain on Lyrica? I am fearful of this, i know I sound vain but who can afford to buy new pants these days!?! I am currently taking a low dose, .25 of Klonopin, 300 of Gabapentin, and .25 of Ropinerole. I have only been taking the Ropinerole for 3 weeks and reading all these comments about the trouble augmentation I wonder if I should not take it anymore. I am desperate. Abby, I had come off of Klonopin last year from .5 I shaved the pill with a razor and it took me 6 month to come off. Then this RLS happened and I am back on arggggggg I too want to go off everything but I cannot function.
I have symptoms all day. What the heck do you all do if have symptoms during the day?? I suppose I could try 100 Gapapentin. Taking low does Opioid totally freaks me out.
My last question is I am trying to come off .5 of Lexapro and it is brutal too. Can I stay on this low dose, or do you all think this makes RLS worse?? I have read SSRI's are a problem. I am completely overwhelmed. Seeing a Neurologist tomorrow so I can let you know what she says. I did not intend to take away from Abby's post. Thank you dear ones. xx
Also wondering if I could try Cymbalta. Not sleeping makes you depressed for sure.
Hi! I’m sorry you are having such a difficult time! I don’t know about Lexapro and Cymbalta but I have read that the only antidepressant that doesn’t cause RLS symptoms is Wellbutrin. I have been in that before and it helped with weight loss, too. I just had to take it really early in the morning so it didn’t keep me awake at night.
I think withdrawal can trigger RLS. My brother suggested either clonidine or Librium to help with withdrawal symptoms. He’s not a doctor but he sometimes has RLS when he takes certain medications.
Thank you &or telling me how you tapered down on clonazepam. I’ll have to do that if the doctor won’t switch me to a different form of clonazepam or to diazepam.
I hope the neurologist can help you! Let us know what they say.
Also, to your question about weight gain, yes, when I first started on it, it made me feel hungrier and I gained weight. However, now that I know what to expect, I’m keeping a food journal and using Noom to help me lose weight.
Cymbalta makes RLS worse. I found that out the hard way. I was taking gabapentin which completely controlled my symptoms, but when I started cymbalta, my RLS went through the roof. I have read that coming off Lexapro can be horrible. Take it slowly. Either Wellbutrin or trazodone are safe antidepressants for RLS. I only gained a couple pounds on gabapentin, and was able to shred them. Yes, I would come off the ropinirole. You might want to cut it in half and reduce the 2nd half after 2 weeks. 300 mg of gabapentin is a low dose. It takes 3 weeks to be fully effective. If you have been on in that long, then ask your doctor for 100 mg capsules and increase every couple of days until you find the dose that works for you. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." Ask your doctor for 100 mg capsules and increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, take it at least 3 hours before gabapentin as it interferes with the absorption of gabapentin. Have you had your ferritin tested? If so what was it? Increasing it to 100 or more reduces symptoms in 60% of people. Since coming off klonopim, ropinirole and Lexapro all at the same time can make your RLS worse, I would do just one at a time, taking ropinirole 1st, then Lexapro, and then klonopim.
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