This is my first time posting as I found this group just a week ago, and it’s been so helpful and informative! I have suffered with RLS for several years now and my past Dr. put me on ropinirole . I basically titrated up immediately and I’m currently at 3mg and some nights even that doesn’t help if I’ve been on my feet a lot during the day. Fast forward to my starting to see a new internist last year and she has wanted me to get off sertraline (low dose for anxiety I’ve been on for years) using gabapentin, as well as for my RLS. She also wanted my iron levels to go up so I started taking iron glycinate, which brought my levels up from 51 a year ago to 96. I had no idea why she wanted all these changes until I started reading posts on this site! I obviously have a dr. who is up to date on a lot of the research. I’ve got a few questions for this group tho:
1. Can you double the iron glycinate (29mg/capsule) safely since I’m still under 100? My other levels were:
Iron 63
Iron Binding 271
Saturation % 23
2. Dr. wants me to wean off sertraline and take 100mg gabapentin 3x/day. So far I have only taken 2 in the evening and I feel like I’ve been drugged during the night, so I’m afraid they’re going to make me too sleepy during the day? I can’t imagine taking 1200-1600mg like I’ve seen mentioned on this site!! However, it isn’t going to help my RLS at that low dose I’m sure. Any suggestions?
Thank you I’m advance for any advice!
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GardeningGal63
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You are very lucky to have found a knowledgeable doctor. The sertraline makes RLS worse so you do need to come off it. A safe medicine for anxiety is trazodone which also helps RLS in some cases. Unless you have RLS during the day, there is no reason to take gabapentin then, You also need to come off the ropinirole as you are suffering from augmentation. And the gabapentin isn't going to help much until you have been off it for a few weeks. To come off ropinirole, reduce by .25 mg every 2 weeks or so. You will have increased symptoms. 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. But in the long run, you will be glad you came off it. Once you are off the ropinirole for a few weeks and you symptoms have settled, increase the gabapentin 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. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. I'm a little confused on the iron. You say iron 63. Is that your ferritin? you also say my levels up from 51 a year ago to 96. Is 96 your ferritin? I ask because ferritin is the important one for RLS. Yes you can double up on the iron. Take it with 100 mg of vitamin C or some orange juice since that helps with its absorption. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it can interfere with its absorption. Take it every other day or at least 24 hours apart preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach
It's refreshing to hear of a doctor who actually knows about RLS. You can safely take 2 x ferrous bisglycinate and it is actually more effective to take it only once EVERY OTHER NIGHT. However, you haven't posted your serum ferritin levels. That is the figure that needs to be above 100.I presume the new doctor wants you off Ropinirole because of augmentation and hopefully has advised you to reduce slowly by 0.25mg every 2 weeks.
The gabapentin is a good idea for both RLS and anxiety. Sertraline worsens RLS.
However, gapabentin is very sedating if taken during the day so try taking it in the evenings only. You can take 300mg in one dose and then increase by 100mg to 600mg. When you stop the last dose of Ropinirole you can add a second evening dose of gabapentin and titrate up to 1200mg in 2 x600mg evening doses 2 hours apart. Any dose above 600mg is poorly absorbed.
Hopefully the gabapentin will relieve the anxiety as well as the RLS.
Several years ago a different dr. put me on trazadone as a sleep aid even tho I was on sertraline for anxiety. I was going through perimenopause and not sleeping well, but I went off of it. Interesting how every dr. has their own take on drugs.
So many great comments that I’m forgetting earlier ones. I just replied to you about iron supplements and now re-read this post, so sorry! I will double the iron every other night and appreciate your insight on gabapentin. I think that is the way I’ll go with titrating up to larger doses in the evening. I don’t have terrible anxiety but both times I’ve tried to stop sertraline over 20 years I start to perseverate on things and don’t sleep well. I do think trazodone could aid instead. Thanks again for your inputs.
Thank you so much for your timely replies! Sorry about the iron confusion but yes, my ferritin is what went up from 51 to 96 by taking the iron glycinate, and the other blood tests were called “iron and iron binding capacity” which I gave the numbers for. That’s about all I know about iron. So you’re saying that I will most likely go from 200-300 up to possibly 1600 gabapentin to get relief from RLS? I feel like I’ll be sleeping for a week on that, lol.
Just to share recent experience of coming off Ropinerole on to Gabapentin with you, take from this what you will...
I have suffered with RLS for over 20 years, suffering 8n sipence for most of thaf and was only a night time issue, I went on to Ropinerole 7 years ago starting at 1mg this quickly addressed the night time RLS but found very quickly that I was then getting Daytime RLS whenever I was trying to sit and relax, over the course of the next 3 yearsy Ropinerole dose qas gradually moved up to 4mg which helped immensely but for the last year augmentation begun and dayte RLS was horrendous... fast forward to 2 months ago, Id had enough and read on here about Gabapentin, consulted with my Doctor and requested a move on to Gabapentin, my Iron levels were checked and were up in the 80's so no concerns there, I was initially on 300mg of Gab (100mg x 3 times daily), this was having no effect apart from making me feel woosey so was topping it up at night with a 2mg Ropinerole so I could sleep, I did this for a week, consulted with the doctor again who put me on 600mg of Gabapentin (100mg x 6 times daily) again for a week no effect on the RLS day or night and was topping off with Ropinerole at night, this however started causing my blood pressure to spike and I was feeling extremely hungover most days with very bad headaches, but was told and had read that it does take time for the Gabapentin to really start taking effect, I'd run out of Ropinerole now so spent 3 nights without hardly any sleep as the RLS was so bad but I stuck with the Gabapentin and begun taking 25mg of Amitryptaline at night, i started to see an improvement at 3 weeks where I was now falling asleep and actually sleeping right through getting a good block of sleep for 5 to 6 hours, 2 months on of taking Gabapentin the change has been amazing and im.no longer taking the Amitryptaline, I will get a good 7 hours sleep most nights without waking and daytime RLS has almost gone, i cam generally sit down for an evening with my partner amd watch a film without any discomfort from the RLS.... I guess the moral here for me was to just stick with the Gabapentin it was a rough ride for a couple of weeks but the end result has changed everything for the better
Thanks for your input! I’ve been on ropinirole about as long as you and I guess I should be thankful it hasn’t turned into anything worse than nighttime RLS; HOWEVER, I can never take a nap during the day cuz then it rears it’s ugly head. So frustrating. I’ve stopped the 1mg ropinirole 2 hrs before bed and am taking 2mg an hour before bed along with 300mg gabapentin. Only done this for 2 nights so far and I’ve slept pretty well. Others have said to wean off it slowly so will try to cut the 2mg to 1mg next week.
Do you still take gabapentin 6x a day? Is that something you have to do to make it work at night or could I work up to taking a larger dose before bed? I really don’t want to be trying to remember to take pills all day long…
The best way to reduce Ropinirole is to ask for 0. 25mg pills & reduce by 0.25mg every 2 weeks.Amitriptyline is a tricyclical antidepressant & worsens RLS for 99.9% so best avoided.
I seem to recall it being mentioned on a webcast a few years back.May be overstated but in the 6 years I've been on this site, I've only ever come across 1 person who stated it didn't affect their RLS.
I would try to ce.off Ropinerole completely, although I was forced to because I ran out, I'd say if you can get down to just 1mg of ropinerole at night then bite the bullet and come.off it completely but step up the Gabapentin while you do, the last few nights ive been dropping down to 400mg of Gabapentin without any issues taking a 100mg at 4.00pm then 2 x 10g at 7.30pm and then another 100mg at 10.00pm then off to bed.
While I was on just Ropinerole there was no way I could nap during the day, I had to keep busy all the time, this last couple of days I have actually been able to nap dueing the day which is a god send and my partner is so happy at that, she loves a daytime nap and has always been so frustrated at not being able to nap with me, we have a baby due next month so making sure we can both nap when baby is sleeping has been at the top of our minds, so making the change to Gabapentin has been a game changer.
Yes Amitryptaline is a sleep aid, but Ill only take one at night now if I feel I really need it.
When do you still have your daytime RLS? You should take gabapentin 1 to 2 hours before that to give it time to work. At night take the full 300 mg 1 to 2 hours before bed. There is no advantage to taking those small amounts earlier. Above 600 mg, you do need to as gabapentin is not fully absorbed above 600 mg. I might add, the amount you are taking is a very low dose - in fact that is usually the starting dose. Although it works now, you will probably have to increase it. 900 mg worked for me for several months and then I had to increase it to 1500 mg which I have been on now for over a year.
I’m hoping I will have titrated down off of ropinirole and settled in to gabapentin by end of October; however, I will be flying to Hawaii then and what would you suggest for such a long flight? Especially if I haven’t gotten dosages figured out yet?
Book an aisle seat so you can get up and walk around. If you belong to the Restless Legs Syndrome Foundation, download the Restless Legs Syndrome Special Accommodations Card to give to the flight attendant. Otherwise be sure to talk to the flight attendant and explain that you will be walking a lot. I would think that by October you would probably have the dosages figured out. Good luck - sounds like a great vacation.
I should correct my reply, but rather than edit incase its missed, my Gabapentin doses are 300mg tablets not 100mg, so as it stands today ive adjusted to 4 x 300mg and thats spread as per the original reply.Interesting to read about Amitryptaline worsening RLS, I went on these as my doctor told me that it can help with RLS..... just goes to show how uneducated most doctors are on RLS. I am pretty much off Amitryptaline now anyway, taking only when I have trouble getting off to sleep in the first place.
OK with that correction, you shouldn't take 600 mg 1 to 2 hours before bed and 300 mg 4 hours before bed. You want your larger dose closer to your bedtime.
I take 800mg 3 times a day for neuropathic nerve pain. It certainly works. It doesn't make me that sleepy but it does affect my balance. Makes me feel drunk, affects my memory and causes brain fog. You have to build up gradually to a tolerable level that works. 100mg is a very low dose.
I'd give the gabapentin plenty of time. Wait till you are completely weaned off ropinirole and sertraline before you decide what dose works for you. And consider waiting a week before each 100 mg increase. You might not need 1200 mg.
I should add that when gabapentin is prescribed for other types of nerve pain or irritation, patients are told to give it 6 weeks to be fully effective.
I do only take 1 or 2 300 mg of Gabapentin each evening and it works ! I felt super drugged up and tired in the higher doses they recommend. Everyone has to remember all bodies are different and ready to mess differently. You have to find what works for you. I couldn't get my iron /ferritin by taking oral iron I was at 21 ferritin. I had an iron infuse about 6 weeks ago last week with a blood test showed it was @165 . I have done this before and it eventually right back down
So at my appt next week I am going to ask him for another to see if it stays closer to 100
I’m in the Twin Cities, MN. Good to hear you don’t need such a high dose of gabapentin. My sister has MS and takes a lot of gabapentin but she also takes ropinirole. 🤷🏻♀️
You might want to try switching to pregabalin. Although they are basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose. So you might try 50 mg pregabalin and if OK, increase it by 25 mg every few days to see if still OK.
Thank you all for your input. It helps so much to hear others way of dealing with this. I’ve always said that if our house is burning down the one thing I’d grab is my ropinirole, haha. So thinking of going for days/weeks with the nighttime torture seems daunting to me. However, after reading your inputs, I know it’s something I’ll have to do.
It's a struggle. Doctors seem so unaware of the risk! Ropinirole should come with a black box warning and all patients should be informed of the signs of augmentation. But you can get there, and you'll be better off when it's fully out of your system.
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