New member - Rx transitions and Mayo Clinic

[walkerwear]

Hello, I've just joined the group because I'm planning to do research for my husband who has horrid RLS. I hate to see such a wonderful man suffer so, and his RLS just keeps getting worse.
About me: I'm near but not at retirement age, and many would say I'm a whip-smart person, an aerospace engineer by trade and cyber/IT manager in recent practice. I've been married to my husband since 1987.
Now the important stuff: my husband is a bit over 10 years my senior, and has had RLS since 1980. His sleep quality and quantity has never been good the entire time I've known him. He's been seeing a neurologist for RLS maybe 10-15 years? And 5-10 years ago, I browbeat him to do a sleep study which showed that he has apnea. He doesn't tolerate the BiPAP because it makes him feel claustrophobic and worsens the RLS. He has an appointment to get a dental appliance fitted. We'll see if he can tolerate its use.
He has been on most meds that I've seen in normal RLS use, but now that we're in this group, I'm going to check off what he has and hasn't be prescribed. It seems when he gets a med that works, it only lasts a couple years before he maxes out the dose and/or has serious augmentation issues. He tried gabapentin, but that was a disaster.
Mirapex ER was keeping him in moderate health but now he's weaning off that and onto Neupro (spelling?) patch complemented by zonisamide. That hasn't worked so he's decided to go back to Mirapex ER. The attempt to get off Mirapex and onto Neupro has been so awful that we're ready to seek expert care even if it means travel. Our primary care doc is sending us to Mayo Clinic.
How long should we expect to be at Mayo? Does anyone know if we need to be there a day, multiple days, a week???
And how long should one give the transition from Mirapex ER to Neupro, or any two RLS meds? He's been using the patch at least 4 weeks and there was an awful week about 10 days ago where he literally did not sleep from Saturday morning to Friday night. We almost took him to the ER he was in such bad shape. Then Neupro/Zonisamide sorta kinda worked for a week where he got at least 2-3 hours per night, but that's suddenly stopped a few days ago and he's been unable to sleep for the last several days. He's self-determined that Neupro isn't working and is going back to Mirapex ER. Did he give it enough time?
It is SO hard to watch someone you love go through this, and most of you reading this are those who are suffering through the same sort of issues. I surely wish for everyone's sake that medicine would find an effective, long-lasting treatment. Thank you to all.

[stjohnh]

Hello, I've just joined the group because I'm planning to do research for my husband who has horrid RLS. I hate to see such a wonderful man suffer so, and his RLS just keeps getting worse.

Welcome walkerwear. You came to the right place. I don't know about Mayo, but you didn't mention IV Iron treatment.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the guidelines:
https://www.sciencedirect.com/science/a ... via%3Dihub

[Rustsmith]

Our primary care doc is sending us to Mayo Clinic.
How long should we expect to be at Mayo? Does anyone know if we need to be there a day, multiple days, a week???

Since he has already had a sleep study done and there are not any tests that can be done to diagnose RLS, I would not expect that the doctors at Mayo would need anything more than a single appointment, but that could be an appointment that could run for more than an hour.

To prepare, you will need to verify that your GP has sent all of his records to Mayo. This should include the results of the sleep study, his past treatments with Mirapex ER, Neupro, Zonisamide, etc, and the results of any blood tests for iron and ferritin. If one of his doctors has not already done blood tests to check on his iron levels (serum iron, percent iron saturation, Total Iron Binding Capacity or TIBC, and ferritin), then you should ask his GP to perform these tests before going.

As for his situation, you did not tell us the dosage of Mirapex or Neupro that he has been using, but I would assume that both are rather high. He may very well be experiencing augmentation and will need to come off of them and never go back. If so, he will either need to rely upon the iron treatments that Holland has mentioned and/or switch to a low dose of an opioid. Take a look through our information in the Augmentation to get a better idea of what all this means.

[badnights]

I'm late jumping in here but I want to reinforce what Steve said. Your husband's WED/RLS is augmented from use of dopamine-type medications, in this case both the Mirapex and the Neupro. The literature that doctors have access to is confusing in regard to treatment of augmentation. I suspect your husband was prescribed the ER version of Mirapex because some doctor had determined that he was augmenting, and it does say in some of the literature to try the longer acting versions of the dopamine agonists for augmentation. But that is a stop-gap, and eventually the augmentation wins.

Augmentation is a worsening of WED/RLS caused by the medication that is supposed to treat it. The medication works at first. Later, it causes symptoms to return earlier in the day, to worsen in intensity, to spread to the arms and other body parts, and to begin sooner after the patient sits or lies down.

There is no way to stop augmentation and no way to treat it except to stop the offending medication. Stopping will make the symptoms even worse - for a time. Then they get better, back to much better, perhaps even as they were before the dopamine-type medication was started (though we have found that is not usually the case when augmentation has been going on for years).

Your husband has to stop the Mirapex (and all other dopamine type meds, which includes Neupro, ropinirole/Requip, and levo-carbidopa/Sinemet) or suffer an ever-increasing feedback loop of worsening disease and increasing dose. If one day without sleep and with the torture of constant symptoms was hard for him to bear, he might need pharmaceutical help to manage it. The only help is a decent dose of a potent opioid, so he needs a doctor who understands how to treat augmented WED/RLS - not just one who has read something online about it, but one who regularly treats people for it. The Mayo Clinic is a certified RLS Quality Care Center so you should have a good doctor there, but do ask about his/her experience. Don't take anything for granted! Most of all that a doctor knows how to treat him. Learn everything you can and be sure you understand every recommendation.

The bright side of all this is that the worst of the torture and sleeplessness only last about 3-5 days, then he'll see a light at the end of the tunnel. If he can get over that hump, at the point when he can sleep a couple of hours at night, he's over the worst of it and should do everything in his power to keep going. He should focus on nothing else but getting through it for at least a week. If you support him during that time, feed him, fend off people who want to see him, etc., you will be helping him immeasureably. The real bright side is that he will be so much more like his old self once all this is over, and your heart-ache will lessen.

Post-withdrawal, what medication should he be on? For the first few months at least, no dopamine agonists. Later, he might be able to use them occasionally. I hate to say this but the only medications that seem to work well in post-augmentation patients are opioids. There are only the three main classes of medications that are effectivein WED/RLS: the dopamine types, the opioids, and a class of antu-convulsants known as alpha-2-delta ligands. The latter (gapapentin, pregabalin/Lyrica, gabapentin encarbil /Horizant) are more useful in combination with an opioid. That is for him and his doctor to work out later, once the withdrawal is over.

The best recommendation, though, I save for last, and here I echo Holland. If he's a candidate for iron infusion (and most WED/RLS patients are), that should be started right away. The withdrawal could even wait until the infusion has kicked in, to make it easier. A link to the 2018 consensus guidelines on treating WED/RLS with iron can be found in the page my signature link leads to.

[Bridgercan]

Hey walkerwear—just wondering if you and your spouse have been to Mayo yet? Was/is his appointment in Rochester or one of their other sites?

I ask because I went to the sleep clinic in Rochester. I was there more than 2 hours: half hour with a nurse for vitals, current meds, etc, then over one and a half hours with the specialist, who was very thorough. In fact, the appointment was the most thorough I’ve ever had with a doctor. I had a follow up visit that was 45 minutes with the doctor.

Like your spouse a sleep study that the Mayo doc ordered revealed mild to moderate apnea. The sleep pulmonologist I see locally recommended cpap therapy over a dental appliance because of the OxyContin I take for RLS.

The path your husband has been on with dopaminergic agonist drugs (DAs), namely pramixepole and Neupro, parallels my experience and ultimate augmentation. In a word, or well two, augmentation is absolute hell. My spouse was so freaked out he was insisting on taking me to the ER. As a compromise we went to urgent care. It was the first step in a year-long journey of 5, yes 5, sleep specialists, including the one at Mayo. I finally got in to see J. Steven Poceta, MD, at Scripps in La Jolla, CA. Thankfully, I am in his good hands and my RLS is well-managed.

Kudos to you for reaching out to find help and support for your spouse and by extension, for yourself too! i often think it’s harder to watch a loved one suffer than it is for you to be the one suffering. My spouse by nature is a fixer, so it is so hard for him to be unable to help when I go through a particularly bad phase of symptoms and insomnia, or worse, augmentation.

Holland, Steve, and Beth have replied with some of the best knowledge and experience to be found here. I hope you and your husband are in the process of finding care from a good doctor and relief for you both. Please do reach out to the forum as you need to, even if just to vent, as there are many good, thoughtful people here ready to offer support.