Restless Legs Syndrome (RLS) Discussion Board

I’m starting the transition from ropinirole to gabapentin after seeing my PCP yesterday. She ordered labs (will have to have ferritin checked next time).

Iron level = 33 (range 50-175)
TIBC = 369 (range 250-450)
% iron saturation = 9 (range 20-55)
Transferrin = 258.12 (range 160-340)

Reducing ropinirole dose from 4mg to 3mg.
Adding 300mg gabapentin.

Tonight will be first and I’m really nervous but hopeful I’m embarking on a journey leading toward relief.

As you will be already aware 4mg is a pretty high dose of ropinerole regardless that the information leaflet in the pack will refer to this as an acceptable dose. RLS medical experts have advocated for some time that the max should be 1mg daily. Congratulations on making the decision to come off your ropinerole.
I doubt very much that 300mg gabapentin will be sufficient to cope with the withdrawal symptoms from the ropinerole.
What is the weaning plan..... how long on 3mg ropinerole before the next reduction, or are you going to 3mg and see how it goes before the next reduction.
Is your PCP understanding, is she willing to be educated. Is she likely to be willing to prescribe a low dose opioid to help you get through the withdrawal period. Without an opioid it is likely to be a very difficult time with little sleep.
Take a look at the link in my signature, would your PCP be amenable to reading (and taking on board) information from a respectable source.
If you haven't already discussed the use of an opioid I'd be doing so.

The plan is 3mg for 3-4 weeks with increasing the gabapentin at the 2 week mark. I have oxycodone from recent knee surgery that I have available if needed. I’m not a fan of opioids but my doctor is aware that I may need them to get over the initial hump. She is fairly knowledgeable about RLS and very open to learning more. She has a medical student working with her who is going to be her “research assistant” as she herself has a mild case of RLS. When I met her yesterday, she wanted to hear my story and asked great questions for clarification. I suggested this site to her and she told me she had already joined in order to access all the information. I feel that I’m in pretty good hands at this point.

Try to save your oxy until the final week when you actually stop taking ropinerole. That will be the worst week and the one where you don't get any sleep for about six days unless you have some opioids to tide you through the final stages of withdrawal.

And it isn't too early to start thinking about what you will do to treat your RLS after you stop. Gabapentin only helps about 65% of patients and may not be enough post-augmentation. Iron therapy (i.e. infusions) helps about 65% as well (not the same 65%). But many of us end up on low dose opioids post-augmentation due to the changes that augmentation made to us.

Saving the oxy is a good idea. Last night went well though I was pretty groggy when I woke up. My legs started crawling about 11:00 this morning so I took 1/2 of the ropinirole and will take the other half at bedtime. I’m recovering from knee surgery and have a lot of down time icing and elevating which is impossible when my legs are acting up. Hopefully the half will help me through the day and the other half will team up with the gabapentin to get me through the night. And I’m thinking it might help reduce the morning grogginess.

My doctor is addressing my low iron level and said to take a multivitamin with iron. None of them have more than 18mg of iron (most in the form of ferrous fumarate). 18mg does not seem like enough to make much of a difference.

I’m contacting her about checking my ferritin level before proceeding with any iron supplementation. I’ve read through the article on understanding the connection between iron and RLS as well as many of the discussion board entries. Is iron sulfate the best formula to use as a supplement? It seems that 325mg daily is the average dose and am wondering if that needs to be gradually added to allow the body time to adjust?

Iron sulfate is the least expensive form of iron, but can be hard on the stomach for some and requires vitamin C to help with adsorption. Ferrous fumerate by itself will also work, but it is more expensive and not as easy to find.

As for the 325mg dose, that applies to iron sulfate and provides 65mg equivalents of iron, which is the recommended dose. It is the recommended dose because it is about the max that the body can adsorb in one day. It takes weeks to get your ferritin up because the iron has to be processed through several steps before it eventually becomes ferritin. Ferritin is also a very large protein that encapsulates hundreds of iron atoms, so it requires a lot of iron to produce enough to make a difference.

Thank you. That helps clarify things for me.

I've been taking 325mg of ferrograd® (dried ferrous sulfate) for years. Before taking it I started having symptoms in my arms but now I never do.
I also take 1000mg gabapentin and 2 x 60mg of codeine eac night. My symptoms aren't usually too bad but I still need to be up for at for least two 1.25 to 2 hour sessions each night. If I"m totally exhausted I can usually get back to sleep in a few minutes then sleep for a few hours until the next waking session. I don't really mind because I know I'll be able to get back to sleep.

Were you on any medication prior to gabapentin? What dose of gabapentin did you start on and how did you increase?

How long after you started taking the iron supplement did you have relief?

I appreciate your input.

Yes, I was on ropinerole for years. I started to augment when I got to .375mg (one and a half tablets). Luckily for me I was a member of RLS.org and became aware of augmentation so I cut back until I was off it completely. This took many years.

I started taking 60mg of codeine then was able to go up to 120mg thanks to my GP's understanding.

Several years ago (not sure exactly when) I started on gabapentin. Not sure of the dose. A locum prescribed it saying something like "take these") and I got a big jar of 100mg capsules. I had no advice so did not touch it until my new GP also prescribed it years later. I think I started on 400mg gradually working my way up to the 1000mg I'm on now. I asked to increase my dose but my GP said gabapentin could mess with my mind so I didn't press it.

I'm pretty happy with my "cocktail" now even though I'm up for between 1/3 to 1/2 the night every night. Most nights I get about six hours of sleep which is manageable over the four hours I used to get. I've learned to take 12 minute naps when I'm exhausted having found out that longer ones could interfere with sleep the following night.

Sorry this is ramblilng but my memories of when and how much are sketchy.Good luck.

Not rambling at all, in fact very helpful.

So I’m on day five of transitioning and am not coping well. Haven’t slept in two days and crawling legs and arms are 24/7. Not sure I can handle this.

One week behind me. I’ve had very little sleep (which is nothing new). I’m hopeful things will gradually start to improve in the coming weeks so I’ll be ready for the next step down later in the month.

On 3 May you said you weren't sure you could handle this......and look now you have one week behind you. Well done. Congratulations.

I’m finally feeling like there’s some improvement. I had three hours of uninterrupted sleep, got up to go to the bathroom, then slept about two hours more. I’m about halfway through the first transition stage from 4mg to 3mg of ropinirole plus adding 300mg of gabapentin. I also added an iron supplement about one week ago (I admit I freaked out after my first poop until I researched and found that supplemental iron can change the color!).

Overall feeling more positive.