Horizant and Ropinerole

[Mego5dzgrc]

Hello! I am a 38 year old mother of 3 and I have been suffering from RLS since I was a teenager. In the early years, my symptoms were mild and I didn't require medication. I could just fall asleep once my legs started to have the crawling feeling. In my early 20's I started noticing it more, but again, I could still fall asleep with no issues. I was also very obese in my 20s, and had gastric bypass when I was 28. I was about to lose 150 pounds and I have kept it off since then.

After having Gastric Bypass and just doing general blood panels frequently to check vitamin levels, they found that I was severely low in Iron. I started receiving iron infusions several times a year about 8 years ago.

Fast forward to 5 years ago when I got pregnant with my twins. The symptoms worsened when I was pregnant and became unbearable. My OB thought that the symptoms would go away once they were born, but they never did. I visited my PCP a few weeks after I gave birth, and she put me on Ropinerole. It was a miracle for me. It worked great and never looked back.

Over the next few years my symptoms started to get worse. My legs started twitch or jerk violently every few minutes uncontrollably, and sometimes my arms as well along with stronger crawling feelings. It was starting earlier in the day, and anytime I sat down at my desk or to watch TV. I was up to taking 5 pills a day to get my symptoms to stop. It was a nightmare.

In April 2018, I found out that I was pregnant again, and during my first visit to the doctor, they told me that I couldn't take the Ropinerole because it could possibly harm the baby. I broke down and cried in her office. She had no idea what no meds meant for me. Because I had such a big reaction, she referred me to a Neurologist. At this time, I had only been treated by my PCP. This is the catalyst that kicked me into gear and really start researching RLS and how to get treated. This is when I learned that my iron levels could be a factor into my disease as well. I searched for things that could help that didn't require drugs until I was able to see my Neurologist and found the Relaxis pad. My OB gave me the script for it and I paid the $700 for it outright. I decided that if it helped, then it was worth the money. I was also able to see my Neurologist about 4 weeks later. By this time I had started using the Relaxis pad and it seemed to help, while gradually reducing my Ropinerole to 2 pills (.50 mg) a day. My symptoms seemed to drastically improve. My Neurologist switched me to Sinement for the duration of my pregnancy because she said it was a safer drug to take while pregnant. I was able to manage my symptoms during the pregnancy with both the pad and Sinement.

Once I gave birth and stopped breast feeding, my Neuro switched me back to Ropinerole for fear that the Sinement would cause me to go through Augmentation. I have been on it ever since.

Now, after spending the last two years researching, and now belonging to this wonder site, I realized that I was augmenting on my Ropinerole around the time that I got pregnant, and I was forced to reduce the amount I was taking because of the pregnancy. No one had told me about Augmentation, and I had no idea it could even happen. The Relaxis pad has seemed to help by reducing my symptoms somewhat, but now it seems that I may be going through a slight augmentation again. Once I found out what Augmentation was, I never took more than 2 pills a night (.50 mg). But over the last year, the symptoms have moved to my arms and I wake up at 4 am almost on the dot every night with my arms and legs restless. My legs have continued to twitch and jerk for about the last 4 years....maybe longer.

I recently switched my insurance to my husbands, so I had to make the rounds for new specialist. I have a new Oncologist that is monitoring my iron levels, and I was low, and I got my first iron infusion last Monday in over a year. On Tuesday, I saw my new Neurologist. I was so excited because I wanted to discuss my augmentation and what could be done in the future.

He was a TOTAL disappointment. He didn't even know what Augmentation was. I had to explain it, and even then, he wasn't that interested in what I was saying. Once he said "Whats augmentation? I've never heard if it." I just wanted to walk out. He did, however, give me a script for Horizant, but when I asked about tapering off my Ropinerole, he literally said "Well, you dont want to do that. Take both" UGHHHHHH. So, here I am doing my own research and giving the Horizant a shot, while taking the Ropinerole and planning on tapering down next week once I take the Horizant for a week. The thing is, I don't feel any difference on the Horizant at all. I did have an iron infusion the day before I started the Horizant, and my symptoms are starting about 3 hours later in the evening. But, it could be from the iron, or it could be from the Horizant. My jerking is still just as bad once it starts, and I still take my Ropinerole right before bed. I'm still waking up at 4 am with symptoms in my arms and legs. I just turn on my Relaxis pad and try to fight through it and fall asleep again.

So, is the Horizant even worth it?? Should it be making a difference right away? Or should I take it for several weeks to see a difference?

I have an appointment with my new PCP on Monday, and Im going to ask for a referral to Stanford to the Movement Disorders Clinic. I live a few hours away, and at this point, Im not going to go though 20 Neurologists to find someone who know about RLS and how to treat it. Hopefully, he will do that for me. Im being my own advocate. I wont get the care I need unless I push, which is annoying and sad.

Also to note, the only time I've ever had complete remission of symptoms is when I had an opiate prescribed when I had a surgery. No symptoms at all.

What are all your suggestions or advice?

[stjohnh]

If you live near the Bay Area, you might try to get an appointment with "Dr. B." Dr. Buchfuhrer. https://www.rls.org/about-us/board#buchfuhrer. His main office is in Southern California, but maintains an office in the Stanford Clinic in Redwood City. He is probably one of the most knowledgable and kind doctors for RLS in the USA. I live in Palo Alto (next to Stanford), and if I had not gotten my RLS under control with IV Iron, that is where I would have gone

[QyX]

As you already figured out yourself: you are suffering from an advanced state of augmentation. That you are suffering from symptoms in your arms is a good indication for that. Taking into account that you are already getting iron infusions it would make sense to investigate how the situation would be without Ropinirole. Maybe, just maybe a combination of Horizant and the iron infusions is enough to cover the majority of your symptoms but given your history and how your RLS has been progressing over the years I would say that this is rather unlikely and further intervention is necessary.

In terms of therapeutics, I would say you have the following options:

you can try other Dopamine-Agonists (Pramipexole, Rotigotine) but in all likelihood it is just a matter of time until you will augment again. Therefore I think you will have no other option than looking into opioids and find a doctor who is willing to prescribe them for RLS. The movement disorder clinic in Stanford sounds like a good idea but if you can get an appointment with Dr. B, that would be even better in my opinion. Personally I would probably take whatever appointment I can get first.

If you can get a prescription for opioids for time being, I highly recommend looking into Kratom and medical marijuana. There are quite a few people here in the forum who have experience with both Kratom and marijuana for treating RLS when opioids were not available for them. Kratom acts on the same receptors as classic opioids do. You would have to order it online and you should check out what other people shared about Kratom here in the forum but in general Kratom is quite effective as long as you would only require moderate doses of opioids. Given that you are opioid naive (no current tolerance for opioids) you should be able to manage your symptoms with Kratom until you obtain access to regular opioids but until then Kratom could be an effective option.

Medical marijuana is often most interesting for those patients who either can't access opioids at all or are already receiving opioids and have persistent insomnia or are not getting enough opioids to manage all their symptoms. The problem with medical marijuana however is that some people are really sensitive to the psychotropic side effects and therefore don't tolerate it all too well.

Other than that: the anticonvulsants / antiepileptics most commonly used for RLS are rather weak compared to other treatments available. I am not aware of any patient who is able to manage his symptoms alone with drugs like Horizant or Lyrica. There are two other antiepileptics (Carbamazepine & Oxcarbazepine) who are maybe a bit more effective for RLS than Horizant and Lyrica but those drugs are rarely used for RLS in the U.S. due to the black box warning those two drugs have.

So bottom line I think you have no other realistic long-term treatment options than opioids. Initially you might even get enough relief from low-potent opioids like Codeine and Dihydrocodeine. If you can get your PCP to prescribe one of those, it would already be a step forward but long-term you probably will need something like Methadone 5 - 15 mg per day or Oxycodone 10 - 30 mg per day.

I wish we had more options available but the number of treatments available for severe RLS cases with augmentation on Dopamine-Agonists and a weak response to anticonvulsants are rather limited. It is basically iron infusions, opioids and medical marijuana and as far as I know there is nothing in the pipeline that could change this situations in the near future.

[Mego5dzgrc]

Thank you for your responses. I was able to ask for the referral today to see Dr. B, and my PCP was more than happy to do that for me. So, hop I will hear back soon for an appointment hopefully in the next few months.

I am seeing a difference in my symptoms the last few days. I had no symptoms at all until after 11pm, which is unheard of. I think the Horizant is responsible for this. I am still taking the Ropinirole, but I started tapering to. 25mg yesterday. I still woke up at 4am with symptoms in my arms and legs, but I fought the urge to take more Ropinirole, and I did manage to fall back asleep. Hopefully I can continue on this path. But, the kicker is that I haven't heard back whether or not my insurance will cover even part of the Horizant. I was able to get a free month from my Neurologist, but I don't even know if I will be able to continue or be able to afford it past this month.

OH, the trails and tribulation of RLS meds....

[stjohnh]

Good luck with the insurance for Horizant. It is VERY expensive if you have to pay out of your pocket yourself. The insurance company may cover it however, since it is approved by the FDA for RLS. At the same time, the insurance company could require that you try all the approved cheaper meds for RLS, likely pramipexole if you haven't taken it previously.

[QyX]

In case your insurance won't cover Horizant and you are not able to afford it yourself, you can ask your doctor for Gabapentin. Gabapentin is very similar to Horizant since both have ultimately the same active ingredient. Basically Horizant is a long acting version of Gabapentin which works better for some patients but it might not be that relevant in most individual scenarios. If it turns out that Hozirant works, regular Gabapentin most likely work, too and additionally it is also much cheaper. Personally I would investigate this route before I sink hundreds if not thousands of dollars into a drug where I am not even sure if I benefit from it.

Here in Europe / Germany, Horizant is not approved because there is a history of regulators / insurance companies not willing to cover the costs of drugs when they are too similar to drugs already available. The good thing with Horizant is that you only need to take it once per day while Gabapentin you most likely would have to take twice a day.

That you were able to reduce your Ropinirole is also a positive sign. Since it is likely that you augmented on Dopamine-Agonists, a further a reduction of Ropinirole could improve your symptoms even further. Would be nice if Horizant / Gabapentin works for you and you can avoid all the stress and anxiety that comes when you are depended on opioids for your well being .