RLS meds

[jaime77]

I’m at my wits end!!! Up all night with RLS ringing the docs in the morning, what meds shall I ask to swap to?? Ropinirol has stopped working 😭😭😭 I don’t even know what to ask to be put on to help! I just need sleep 😭😭😭

[ookla]

Oxycodone. Opioids are the only thing that can help once augmentation from dopamine agonists rears its ugly head. Do not increase your dose. You need to get off the ropinirol. Sue will have some great advice below.

[ziggypiggy]

You've been here long enough that you know the drill and what needs to happen next. There have been numerous threads for exactly your situation. And what you are facing is no fun. Changing meds sucks. Getting your doctor on board for change can also be intimidating. If it's overwhelming you I suggest you bring someone with you to your next appointment that can attest to the seriousness of the situation both physical and mental. Come armed with the most recent guidelines and studies. If your doc is hesitant try pleading to his/her better nature. Ask them to become part of the journey of becoming better informed about treatment options. This is if especially true if you need to take any mental health meds at the same time. I myself find opiods the best option in this case. Find a dose that not only relieves your RLS under normal conditions but also is strong enough to cover any additional symptoms if mental health medications are necessary.

Best of luck.

You got this

[SueJohnson]

Eventually gabapentin as I advised you in your last post. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as your doctor is obviously not uptodate on it or s/he would never have prescribed ropinirole at

Https://mayoclinicproceedings.org/a... Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day 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 and preferably at night. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. Are you taking any other medicines or over the counter supplements? If you list them I can tell you if any of them are bad for RLS and can perhaps give you a safe substitute.

[Joolsg]

Augmentation and withdrawal are hell BUT the torture won't stop until you're off it. So start now. Reduce 0.25mg every 2 weeks.In the meantime, start raising your serum ferritin by taking ferrous bisglycinate every other night.

Apply for medical cannabis via The Medical Cannabis Clinic as Cannabis with THC can help.

[kygigi3 in reply to Joolsg]

Making medical Cannabis brownies is the absolute best treatment. But not legal in GA where we just moved. So I have to grab some when I can. Making cannaoil with coconut oil absorbs the most thc. It's a process but ohhh so worth it.

[kygigi3]

I have severe rls with augmentation. There has been nothing thats ever worked until Mirapex. However after 2 years rls is coming back. I don't know where to go from here. Don't start taking opioid for rls. It will lead to another problem. I would try Mirapex if you haven't. The day I found it was the most glorious day! Until it quit working like they always do ropinerole made me feel very strange. We are all different.

[Joolsg in reply to kygigi3]

After augmentation you should never try another DA as it'll happen again very quickly. Alpha2Delta ligands like gabapentin and pregabalin are now preferred first line treatment & low dose opioids for severe, refractory RLS.The Massachussetts opioid study, funded by Rls.org in the USA shows that low dose opioids are safe & effective long term & don't lead to addiction ( unless there's a history of abuse). The new Mayo algorithm should be used by all doctors.

[SueJohnson in reply to kygigi3]

You need to come off the Mirapex. Reduce by .125 mg every 2 weeks or so. You will have increased symptoms. You will suffer and may need a low dose opioid temporarily to help out with the symptoms. But in the long run, you will be glad you did. The current first-line treatment for RLS is gabapentin.The beginning dose is usually 300 mg gabapentin or 100 mg if you are over the age of 65. Start it 3 weeks before you are off Mirapex although it won't be fully effective until you are off it for several weeks. After that 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. 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 don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't at

Https://mayoclinicproceedings.org/a... Low dose opioids do not lead to addiction and as you will see in the article are a recognized treatment for RLS. Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms.

[kygigi3 in reply to SueJohnson]

Nooooo no way! I've been on gabapentin. Took it for 12 years. When I stopped taking it I thought I had the most horrific flu for 9 days. After 9 days I was no better! Went to ER and they figured out it was withdrawals. I had never experienced that. It was horrible. No way will I take something that causes that. Then I started hearing about people abusing it and it's now on controlled substance list in many states. It messed up my nerves so bad that nobody could touch me anywhere on my body. I couldn't even touch myself. My nerves were so messed up I will never do that again. It worked for rls for a few years then it stopped. I also took for nerve pain. Mirapex doesn't have side effects nor does your body get addicted to it.

[SueJohnson in reply to kygigi3]

One does not get addicted to gabapentin. One can get dependent on it, but that is different. One should never stop gabapentin suddenly as you learned. It should be stopped slowly and then one does not have any withdrawal effects. I am sorry for your experience. You say your nerves were messed up. Was that from the withdrawal? Or before you quit gabapentin?

[ziggypiggy in reply to SueJohnson]

Gabapentin is not completely immune to addiction. Especially those with a history of addiction problems.

"A study published by The Annals of Pharmacotherapy reported that addiction to and abuse of gabapentin were most likely to occur in individuals who had a history of addiction to other substances, including alcohol, cocaine, and opioids."

It's still one of the safer options but with its widespread use more side effects are being reported and studies been done. For example, we recently learned during the last couple years that gabapentin can increase suicidal thoughts in some patients. Everyone is different. Weight the risk versus reward with yourself and your prescriber.

[SueJohnson in reply to ziggypiggy]

I searched google scholar for articles on gabapentin addiction. You are right that it can happen, but it appears that it is extremely unlikely to happen in those without a history of addiction and that it is also most likely if amounts over the recommended maximum amounts of 3600 mg of gabapentin or 600mg of pregabalin are used. Interesting it is used to treat addiction. Yes one of the rare side effects is that it can increase suicidal thoughts in some patients.

[ziggypiggy in reply to SueJohnson]

I've been on it several times over the past 20 years for various things. The last time I was prescribed it was for anxiety at 900 mg a few years ago. I did experience the side effect of increased suicidal thoughts so i had to stop it immediately. Some doctors are just learning about this particular side effect as the study was fairly recent. As the sixth most prescribed medication on the market I expect new studies being undertaken to continue to evaluate its safety. Just in my immediate circle of family and friends I know eight people being prescribed gabapentin for a wide variety of ailments. Since my experience, I've asked those around me if they were aware of the side effects of gabapentin. Especially my family members also dealing with depression. None of them knew about that. Suicidal thoughts are a very tricky thing to evaluate let alone pin to a specific cause. They come and go in intensity. It's also an extremely private issue that most people dont like to discuss even with their health professionals. My concern is it may be underreported by it's very nature.

Saying that, If I didnt have the side effect I would take it as it is effective for many things.

I know depression has a high comorbidity correlation with RLS. So if you are on gabapentin or looking to try it and have a history of depression issues its definitely something you and the doc should be monitoring closely.

[SueJohnson in reply to kygigi3]

Your doctor was very negligent in having you stop suddenly.

[Joolsg in reply to kygigi3]

.Dopamine Agonist withdrawal Syndrome ( DAWS) is a very real condition- lots of articles about it. Getting off ropinirole and mirapex is hell on earth, much worse than getting off gabapentin or opioids. That is why they're no longer prescribed by experts. Mirapex has terrible side effects- Impulse Control Disorder and augmentation are the 2 most common. Your body does actually get "addicted" to mirapex because you start to need higher doses to achieve the same effect, you panic when the pharmacy has no stock and sadly, taking higher doses makes the RLS even worse.Gabapentin cannot be stopped cold turkey. You should have reduced very slowly over months.

I withdrew from ropinirole in 2016 and it was the worst experience of my life.

I reduced pregabalin ( similar to gabapentin) extremely slowly over about 7 or 8 months and therefore had no side effects.

Just put mirapex or pramipexole in the search engine and you'll see the thousands of posts about people suffering on mirapex and their trauma going through augmentation and withdrawal.

If you do decide to get off mirapex, do it as slowly as possible. As you say, the RLS is coming back and it will get worse and worse until you get off it.

[Marky1017]

Opiods are pretty much the easiest option at this point. However getting a dr to prescribe it is almost impossible. Most dr wont prescribe it at all and certinely not for RLS. I finally found a RLS specialist who prescribed methadone and it has done a good job of controlling my RLS. Constipation being the main problem for me. Also some mild insomnia. Dont be afraid of using opiods and as long as you have someone to prescribe it you should never have to go off of it. Think of it as insulin for a diabetic you will need it for life unless im mistaken on this.

[BAK524 in reply to Marky1017]

Can I ask who is your specialist and where are they located?

[Marky1017 in reply to BAK524]

Austin, Tx USA. Dr Wijemanne. I know this is mainly a UK RLS site. I cant find any mainly US based sites that compare to this one. This particular site has essentially saved my life at my worst moments by giving me hope from people who have experienced the same thing I have.