Abilify

[ViewsAskew]

Sleuth, my signature line will lead you to a it and a search within the board will find it. It changed recently; I updated the links I could find.

[Sleuth]

Ann,

Thanks. I just printed it out. It looks like it's a bit much for a lay person to understand.

I will read it later and see what I can understand.

[ViewsAskew]

If you are not familiar with RLS and are not familiar with the concept of how an algorithm works, YES! It can be difficult to read!

I'll offer this advice. First, read just the text. Get familiar with what the text is saying. The text is the "rules" as you will as to why the algorithm has you do or not do certain things.

Look up any terms you are not familiar with. We have a dictionary of terms in the sticky on Managing RLS in the New to RLS section. That might help.

Once you have a basic understanding of the text (and remember, this was written for doctors, not the rest of us!), you can interpret the boxes. The first set of them are for managing RLS that is intermittent - it happens once in awhile, but not everyday. The top box says just that. Following the arrows, you have two choices: treatment with drugs, or treatment without drugs. First, follow the arrows on the left, because usually these are interpreted left to right, so you'd try those items first. It says that you can try alerting activities. That just means things that make/keep your brain active and involved. That is often all you have to do to remove the RLS. Then the next box says to consider stopping alcohol, caffeine, and nicotine.

In this way, you read through the boxes and try those things. For non-pharm, you can try multiple things at a time, but in the pharm section, usually you only try one thing at a time.

Each set of boxes works pretty much the same. There is a bit of an order implied by the order of the boxes, but that doesn't mean you HAVE to follow it. You can skip a bit if you've already tried something, you're allergic, etc.

Does that help at all?

[Sleuth]

I just printed out your instructions. I will use them when reading the algorithm.

I have to say that I am very discouraged. Yesterday I tried calling a number of doctors for a referral to a neurologist familiar with RLS. None of the doctors I called knew anyone.

One doctor told me to drink a bottle of tonic every night before going to sleep. She said that should help.

[ViewsAskew]

Good heavens...tonic is an old, old, old remedy when RLS was believed to be leg cramps of some kind. It won't help unless you have leg cramps.

This is the hardest part, in my eyes. The first time I needed a doc desperately, I went through many - 8, 9, 10 or so. From neuros to sleep docs to garden variety, I couldn't find anyone who KNEW anything.

I found one who was trainable - that is just as good. He was willing to learn, read up on it, talked to Dr B, etc.

It took me three years to find one closer to home and it turns out now that she isn't the right one as she doesn't really want to learn about RLS and how to help me.

So, I am back to what you are doing. If I come up with any tips, I'll let you know.

[jumpy]

This may be going into the back door. But, do you know any RN's? I had two surgeries this year and both times the pre-admin nurse asked me if I was on Requip for RLS. And then wrote instructions on the forms of anti-nausea drugs not to give me. Sometimes they know more than some doctors.

Maybe you could find a nurse that could recommend a doctor???

Good luck, Pat

[ViewsAskew]

An RN is a GREAT suggestion, Pat.

I don't know any, but the first time I was looking for a good neuro, I talked to them at each office and unabashedly told them how miserable my situation was and asked if their guy or gal was the right one to help. I needed to know how much experience the person had.

They were surprisingly candid.

[Sleuth]

You all mention anti-nausea medicine. What exactly is that? Would that be your ant-acids or Prilosec? I take Prilosec OTC.

My RLS is getting worse at a breakneck speed. I wonder if there is something I'm doing to make it happen so quickly. Up until a week ago, I had to problem sleeping. Now I can't sleep either.

There is a movement disorder clinic at Beth Israel Hospital in NYC. I went there a few months ago, but the doctor wanted me to take a Parkinson's drug that had not been approved for RLS. I think it was Requip XL or Requip X. I was afraid to take an experimental drug because of my disasterous results with Abilify. Now I think I may go back to see her. I am desperate.

There are other things in my life which are falling apart. I am so overloaded with problems and stress that I don't know which way to turn.

[Neco]

Requip XL may not be approved, but that doesn't mean it won't work.. If I recall the only difference is it is a time released version of Requip, that would give you more even coverage over the course of the day.

The majority of medications people take that are successful, are not approved for RLS, so it really comes down to understanding the specific med and interpreting the risk:benefit on its merits, not its approval status.

[ViewsAskew]

Sleuth, just to set you at ease, antinausea drugs are things used to stop vomiting - not things like Prilosec. But, Susan can tell you more...

[SquirmingSusan]

Here I am, did someone mention my name? Antinausea meds are usually sedating antihistamines like compazine, phenergan, benedryl, doxylamine, or even some of the antipsychotics, like haldol. (Those are also sedating antihistamines.) If you need an antinausea med that doesn't bother the RLS, there are newer ones like Kytril or Zofran. But because they're still on patent, they're pricey.

There is also one called "domperidone" that's available with a prescription from Canada, or OTC in Mexico.

So no, don't worry about your Prilosec. That kind of drug is called a proton pump inhibitor, and decreases the secretion of acid in your stomach. Those can indirectly worsen RLS, I guess, because they block the absorption of iron from the gut. But they don't directly cause problems for us.

[cartooner]

Hi, I'm new to this. I'm 56 and have had RLS for about 30 years, but with greater intensity for only the last 5 years or so. My Phychiatrist originally put me on 1.5 mg of roprineral because I was complaining about RLS. I had never thought of seeing a doctor for RLS. I didn't know you could 'fix' it. My mom suffered with it for many years also not knowing there was medication for it. The roprineral is working well enough to keep my sanity. It does let me sleep through the night but I still tend to get mildly restless during the day. As for as naps throughout the day....forget about it!

I've been taking an antidepressant for the last 35 years which has relieved my mild depression. I'm currently on Zoloft. I'm currently in a stressful situation so my Psychiatrist put me on Abilify. I layed down one afternoon expecting to be back up in about 10 minutes, but to my suprise I fell asleep and woke up about 2 hours later. At first I didn't attribute that to the Abilify. But after having absolutely NO RLS for the last 2 weeks, I now know it's the Abilify. Prior to this, relaxing during the evening was a chore until my roprineral kicked in. But now, I can relax like I have no RLS at all.

Of course I'm still worried this will be temporary and maybe somehow in the long run it will get worse again. From what I've heard it seem Abilify makes RLS worse, not better. But for now I'm happy. Also I've been weaning off the roprineral. I'm down to 0.5 mg and am going to try not to use it at all sometime later this week.

[Polar Bear]

Cartooner, the fact that Abilify is not causing your RLS/WED to worsen just goes to show how different we all are and how we
differ in our reaction to medications.

Well done on your weaning of the ropinerole. Good luck.

[jittery girl]

"From reading these postings, it seems that there is no relief through medications." Yes, sleuth, there is relief. I found it with Tramadol. Very little side effects. I have a severe form of RLS, with crazy horrible miserable nights. Please don't give up. I am also limited with what I can do because I dose my drugs in early evening. But what you are going through is unacceptable. I repeat, don't give up. Talk to your doctor about Tramadol. And be sure to take it early enough in the evening, before ANY symptoms start.

[cartooner]

Just a followup. So far so good with the abilify. I've been totally off the requip for about a month now without any problems. The only issue I'm having is that I'm having some minor restlessness in my arms (mainly right arm). It feels as though I can't totally relax it. This is only an occasional issue ( a couple times a day ). I'm just grateful I found abilify and hope it doesn't somehow alter it's effectiveness over time.