new member - transitioning from ropinirole to gabapentin

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bhud
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Joined: Tue Oct 20, 2020 9:43 pm

new member - transitioning from ropinirole to gabapentin

Post by bhud »

I am 54 years old and I was diagnosed with RLS about 6 months ago. I spent many sleepless nights before going to the doctor and I am glad he correctly identified the problem.

The downside is my doctor prescribed ropinirole. He told me there were seldom any side effects and I could stop taking at any time with no withdrawals. He also said drinking tonic water may be enough to correct problem. Tried that first with no luck and then ramped up to 1 mg dosage of ropinirole. It worked great until about two weeks ago when my symptoms started occurring in the afternoon. I am glad I found RLS.org and read about treatment options and ropinirole augmentation.

I went to new family medicine doctor two days ago, my previous doctor retired. I told him I wanted blood work to see my iron levels and explore other treatments. My serum ferritin level was 45 mcg/L which the doctor told me was in the normal range. He was receptive to what I shared about my reading on RLS.org but has not treated many patients with RLS.

I started taking 325 mg of ferrous sulfate and transitioning from ropinirole to gabapentin. Dropped dosage of ropinirole to .5mg with 300 mg of gabapentin last two days. I have only been able to sleep about 2 hours per night and cannot nap during day. Sometimes it feels like a nail is being driven into the bottom of my foot so I walk the floors all night to get relief.

Hopeful tonight will be better but I am committed to getting off ropinirole. If gabapentin is not effective, I may try Horizant and hope my insurance will approve it. I am hopeful that increasing iron levels over next 3 to 6 months will decrease or remove symptoms.

Any guidance is appreciated, but I also needed to share my plans with a group who can relate.

Rustsmith
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Re: new member - transitioning from ropinirole to gabapentin

Post by Rustsmith »

bhud, since you were starting to augmented (afternoon symptoms), getting off of ropinerole is going to take about a week. In fact, you are fortunate to be getting 2 hrs of sleep. Most people don't get any sleep for 5 to 7 days. Gabapentin isn't enough to cover the withdrawal symptoms, so you face another few days of very little sleep before things get better. Hopefully, since you were not taking that much ropinerole, you will be on the low end of the withdrawal timetable.

Sorry to be the bearer of bad news, but at this point, the light at the end of the tunnel in a few more days is not a train :P
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

bhud
Posts: 18
Joined: Tue Oct 20, 2020 9:43 pm

Re: new member - transitioning from ropinirole to gabapentin

Post by bhud »

Rustsmith,

Thank you. I appreciate the realistic projection so I have the right expectations. One of my concerns is the gabapentin will not be effective but I have to stick with the plan to transition off ropinirole to find out.

I plan to increase to 600 mg of gabapentin in 5 days and stop taking ropinirole. Is this too aggressive? Would it be better to reduce the ropinirole dosage from .5 mg to .25 mg in 5 days, continue at .25 mg for another 7 days before ending it completely?

Rustsmith
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Re: new member - transitioning from ropinirole to gabapentin

Post by Rustsmith »

It would probably not be a bad idea to slowly reduce the ropinerole so long as it isn't causing you to lose too much sleep. If you are going without sleep, then slowing the reduction only draws out the misery.

As for the gabapentin, there isn't any reason why you shouldn't start titrating up at the same time as you are coming off of the ropinerole. The gabapentin won't cover the DA withdrawal symptoms, but it might help speed up the recovery after you start coming out the other side of withdrawal. And we can only hope that you are part of the 65% of RLS patients that get full benefit from gabapentin. Many of us with very severe RLS combine gabapentin with other meds. I am part of the 35% for whom gabapentin doesn't help with the movement urges, but it does help me fall asleep when combined with the rest of my RLS meds.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

bhud
Posts: 18
Joined: Tue Oct 20, 2020 9:43 pm

Re: new member - transitioning from ropinirole to gabapentin

Post by bhud »

I have reduced ropinirole to .25 mg and plan to take it three more days before stopping completely. Increased gabapentin to 600 mg last two nights. Able to get 5 hours sleep last two days in 1 to 2 hour segments, but increased gabapentin just seems to give me brain fog and drowsiness. When my feet start hurting and twitching, it trumps the gabapentin. One change is I can now prop my feet up higher than my head and work word puzzles at night instead of constant walking to get relief. I don't know if this is due to increased dosage of gab or a result of reducing the rop in my system.

Tonight I plan to go back to 300 mg of gab to see how I react. Exercising and stretching each day. Not sure if that reduces RLS but it does help with my overall mood and alertness. I'm taking 325 mg of iron twice a day on an empty stomach and tolerating it well. Ate calf liver last night for additional iron and plan to eat it once a week.

I'm going back to doctor on Nov. 15 and may ask for blood work to see if my serum ferritin level has increased from 45 mcg/l. Should I wait longer than one month to test serum ferritin level or is one month on iron supplement enough to see a difference?

Welcome any comments or suggestions on my path to get off ropinirole.

Rustsmith
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Re: new member - transitioning from ropinirole to gabapentin

Post by Rustsmith »

Unfortunately, the hard part of your journey lies ahead when you drop down to zero ropinerole. But it is good that you have found a means of distraction with the word puzzles that seems to help you get off of your feet for a while. At one point, I used Sudoku for distraction but I did it for so long that I got good at it and it didn't provide the level of distraction that I needed. Another option for you is soaking in a hot bath. The two times that I stopped pramipexole, if I had had access to a hot tub, I would have spent days soaking and would have ended up looking like a prune.

As for the gabapentin, it may take a day or two to adjust to the higher dosage. But don't try to titrate the gabapentin up at the same time that you are stopping ropinerole. As you found out, uncontrolled or even semi-controlled RLS is too strong for gabapentin right now. You need to fully recover from the ropinerole withdrawal before you will know whether you are part of the group that can use gabapentin alone to manage your RLS.

As for the iron test, it takes months for oral iron supplements to do very much. So doing another blood test after one month isn't going to show you anything conclusive. Maybe after 4 to 6 months, but not now. The best that you could hope for is to increase your 46 number into the 50's, but you might also come back with a lab result in the low 40's due to random fluctuations.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

bhud
Posts: 18
Joined: Tue Oct 20, 2020 9:43 pm

Re: new member - transitioning from ropinirole to gabapentin

Post by bhud »

I sent my doctor the following message via email today:
"Reducing dosage of 1mg Ropinirole has greatly reduced my ability to sleep and increased my RLS. I have only gotten about 2 hours of sleep each day since Oct 21. Reduced dosage of Ropinirole to .25 mg. Even at 600 mg of gabapentin I cannot sleep. RLS twitching trumps the drowse feeling from gapapentin. Can I get a short-term med to help me sleep that does not contain diphenhydramine as this aggravates RLS?"

A nurse called me from doctor's office and said, "The doctor wants you to stop taking Gapapentin and increase Ropinirole to 2 mg. He also called in prescription for Clonazepam and wants to refer me to a Neurologist."

I asked her to repeat it again as I thought I misunderstood. I said no way am I going to increase to 2 mg Ropinirole. The reason I met with the doctor was to get off Ropinirole because I was augmenting. I asked if the Neurologist has experience treating RLS. She was polite but said there was no way they could verify that for me.

Like so many other people who have posted on this site, I feel abandoned and totally not listened too by my doctor. Not sure where to turn to next.

Anyone tired Clonazepam for short-term sleep while getting off Ropinirole?

Rustsmith
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Re: new member - transitioning from ropinirole to gabapentin

Post by Rustsmith »

I don't have any experience with metaxalone, but I was briefly on Flexeril, which is a different muscle relaxant. I wasn't going through augmentation or DA withdrawal at the time, but it did help me sleep. Unfortunately for me, the sedating part of the muscle relaxants also serves as a central nervous system depressant and I was already taking two of them at the time. The prescribing doctor knew of all my medications, so he should have known better. I was fortunately that he didn't kill me. (FYI, mixing these 3 meds was comparable to drinking a lot of alcohol while on sleeping pills or opioids. You go to sleep and don't wake up).

As for the neurologist, I strongly recommend that you call the neurologist's office and ask to speak with a nurse. Explain your situation and ask if the doctor has experience treating RLS patients who have augmented on a DA. The nurse's answer (one way or the other) should make it pretty obvious if this is a doctor you want to see or not. If not, you can either call all of the other neurologists in your area who accept your insurance or you can call and try to get an appointment with a neurologist at the closest major medical school. Or, if one is within traveling distance, one of the Foundation's Quality Care Clinics would be sure to be able to help you. The only issue with the Quality clinics is that it can take months before the first new patient appointment is available.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

bhud
Posts: 18
Joined: Tue Oct 20, 2020 9:43 pm

Re: new member - transitioning from ropinirole to gabapentin

Post by bhud »

Rustsmith,

Thanks for your response. Glad you survived your doctors major error with your prescriptions.

It is helpful to be able to share and vent on this message board through this process. This is becoming my default diary. I have read other posts describing the treatment of RLS like the Wild West where almost anything can and will happen in treatment.

MJDK
Posts: 25
Joined: Sun Feb 24, 2019 8:33 pm

Re: new member - transitioning from ropinirole to gabapentin

Post by MJDK »

Hello, I am following your post - I too am augmenting on just .25 mg of Ropinirole. I take it at 6 pm, and then take another half at bedtime. Sometimes I take 1/2 hydrocodone (5 mg), or a whole one if the pain is severe enough. I'm trying to switch slowly to gabapentin. I took 300 mg last night and woke in a brain fog this morning, but I did sleep. I tried 200 mg tonight - along with the 1 and a half ropinerole and half of a .5 xanax. Still have RLS breaking through. I'm going to go back to the 300 mg of gabapentin. My neurologist is also going to prescribe Lyrica. I don't know if I can take Lyrica, Ropinirole, Xanax, Hydrocodone and Gabapentin all together or which ones are safe to combine. Everyday is a crap shoot as how to prepare for bed - - - and then a guessing game if I need something else through the night. I would love to get off the ropinirole. Been on it for 2 years. My iron ferritin level last check was 140. Please keep report on your progress. As far as a neurologist goes, do check the recommended doctors on the RLS website. That's how I found mine.

Rustsmith
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Re: new member - transitioning from ropinirole to gabapentin

Post by Rustsmith »

Gabapentin and Lyrica are very similar medications, so if you start Lyrica then your doctor will most likely have you drop the gabapentin. Gabapentin can have an issue where it is inconsistently absorbed and this can limit the maximum effect from a moderate dose for some people simply because a portion of the med doesn't get into the blood stream ans is wasted. Lyrica (and Horizant) does not have this limitation, so it is possible to go to what is effectively a higher dose.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: new member - transitioning from ropinirole to gabapentin

Post by badnights »

bhud wrote:Anyone tired Clonazepam for short-term sleep while getting off Ropinirole?
It's definitely not advisable to take any type of sleeping pill whenever your WED/RLS symptoms are not treated. The WED/RLS is triggered by relaxation, both mental and physical, and that's exactly what a sleeping pill does. So it will trigger the WED/RLS. Or, as I like to say, the WED/RLS beats up on the sleeping pill, and it wins every time.

There are few things worse than intense WED/RLS making you walk around while your brain is effectively asleep - you're awake enough to be in great agony, and not quite enough to walk without bumping into things, definitely not awake enough to read or do anything useful or distracting, and definitely not asleep enough to sleep or even lie down. It is hellish. You mark the time until it is over, because there is nothing else you can do.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

bhud
Posts: 18
Joined: Tue Oct 20, 2020 9:43 pm

Re: new member - transitioning from ropinirole to gabapentin

Post by bhud »

Thanks for all the comments. Here is an update on my attempts to stop taking ropinirole. I went back to 1 mg dose to be able to sleep.

I did some research and found a neurologist with experience treating RLS and augmentation. I had my fist visit with him on November 24. He asked lots of questions and listened. After an exam, he told me to try to reduce ropinirole dosage. One strategy he suggested was taking .5mg one night and going back to .75 mg to 1 mg the next night. This would alternate between a bad night with little or no sleep to a night with sleep. This would reduce the total dosage taken in a week and hopefully help me get back to a baseline. He also told me to combine lower dosage of ropinirole with clonazepam. Also told me to keep taking iron supplement (325 mg ferrorous sulfate) twice a day with vitamin C to aid absorption.

I go back for blood work in February to see if iron levels are increasing from current level of 40. The plan is to increase iron levels and see if that helps. May try to transition to Horizant in February.

I am taking .75 mg dose of ropinirole and getting 6 to 7 hours of sleep. When I drop to .5 mg, I cannot sleep. .5 mg of Clonazepam has does not result in any noticeable effect.

Rustsmith
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Re: new member - transitioning from ropinirole to gabapentin

Post by Rustsmith »

That is great news that you were able to find a doctor who understands both RLS and augmentation. You also have an idea now of what to expect when you eventually have to take your ropinerole dose to zero. And as you have found clonazepam is an effective sleep aid when your RLS is controlled, but it simply isn't strong enough to overcome active RLS on a bad night. There is a bit of risk using it on the bad nights because it can steal some of your ability to walk, so there is an increased risk of falling on the nights when you are up walking around but took the clonazepam earlier that night.

As for your ferritin levels, you may indeed be a candidate for lowering your RLS meds once you are off of ropinerole if you can get your ferritin level up from 40. Don't expect too much increase when you go back in February since increasing your ferritin takes some time. Increasing your ferritin level with oral iron supplements takes time. And there is a chance that if your new doctor is really up on treating RLS, that you could be a candidate for an iron IV treatment if your ferritin is still low when you go back.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: new member - transitioning from ropinirole to gabapentin

Post by badnights »

I like your doctor's suggestion to lower your dose by alternating full-dose nights with reduced -dose nights. He's creative.

Your iron tablets will be more effective if you take them at once. Iron is absorbed best when blood levels get low. Taking iron twice a day doesn't allow blood levels to drop as much. They should be better absorbed if taken together, 24 hr after the last time you took any, preferably on an empty stomach (with vitamin C, as you're doing) a few hours after your last iron-containing meal.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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