Abilify

[Sleuth]

I had extremely mild RLS symptoms for a few years. I would only have a problem with symptoms a few times a year for a few hours. It wasn't even a problem. A few years ago, I was prescribed Abilify for depression. After taking a very small does of this medication for less than 6 months, I developed full-blown RLS. I stopped taking it thinking it was contributing to my symptoms. However, they only got worse when I was off the drug. Every once in a while, I would be so desperate for relief, I'd take a small dosage of Abilify, which took the symptoms away for a day. I saw a doctor who told me that if you take Abilify for RLS, you have to constantly increase the dosage. I haven't taken it in almost 2 years, but suffer terribly with RLS.

Has anyone had a similar reaction to this drug?

Thanks.

[Neco]

It sounds like its some sort of anti-depressant? I've seen commercials for it but can't find a stritct definition anywhere.. It's just listed as a psychotropic.

What were you taking it for originally? Also it does sound very weird that it would cause an increase in your RLS, but then cause relief if you take enough..

That sounds like augmentation, but I was under the impression augmentation was limited to Requip, Mirapex, and Sinemet type drugs..


Unfortunately you need to seek treatment or it's never going to get better. It sounds like abilify acted as some kind of trigger that rapidly advanced the RLS you previously had intermittently.. Given your reaction to Abilify I don't know what Requip or Mirapex would do for you (don't EVER let someone push Sinemet on you.. It is NOT worth it and is torture for chronic RLS).

Many of the common drugs used to treat RLS are..

Requip
Mirapex
Neurontin
Lyrica
Klonopin - doesn't really treat it so much as let you sleep through it.. but some people claim it does reduce their symptoms enough to a sane level.

Opiates - Codeine, Hydrocodone, Oxycodone/Oxycontin, Morphine / MS Contin, Ultram / Ultram E.R (tramadol), Methadone, Subutex (Buprinorphine w/out naloxone), Suboxone (buprinorphine w/naloxone)

It's a long list, and it can be a long hard road to find the medicine you need, especially if you have a doctor who is unwilling to work with you especially if you require opiates..

You should explore the non-opiate drugs first, to cover your bases (unless your doctor wants to try opiates from the start). But if it turns out you need opiates, you have to pick the right one. If your RLS is 24/7 and never lets up, a controlled release opiate is one of the best treatments you can use. C.R medicines slowly release a small amount of medication in your body over a period of about 12 hours, so you receive a constant stable dose.

Ultram ER (tramadol), Oxycontin (oxycodone) and MS Contin (morphine) are controlled release, and Methadone and Buprinorphine are technically short-acting but they last an incredibly long time in most patients, equal to or better than controlled release doses. I usually get about 24 hours of relief from 15 -20mg of Methadone.. Others tend to get less tho. We've heard from one person who takes about 1mg of Subutex a day and has their RLS under control for the time being also.

You may not need opiates, or it may take you a couple years to get there if you do eventually.. So we always recommend you try the non-opiates first.. Requip, Mirapex, Neurontin, Lyrica. They help a good deal of people but not everyone. Sometimes it takes a combination of different drugs from all the different classes, sometimes only one or two, and sometimes you can get by with just one medication.

If non-opiates do not work out for you, you will have the benefit of building a credible treatment history, that no doctor who truly cares can look at skeptically.. So if you ever require opiates, it may be easier to get them without a fuss.. But you may have to go through several doctors before you find one who knows what they're talking about, or is simply willing to try anything to help you out.

Klonopin and other benzos can have some success treating RLS, but their addictive potential is often regarded as risky. They are extremely hard if you need to get off of them, even a gentle taper can be brutal on someone only taking a minescule dose. So I say take them at your own risk..

Here is a link to the Mayo Algorithm for RLS. It is a good guide for patients and physicians, and any doctor who rejects this you probably should not see ever again. The Mayo Clinic is very respected around the world.

http://www.mayoclinicproceedings.com/co ... l.pdf+html

I suggest printing it out and reading it, and then doing your best to get your doctor to read it as well.

[jumpy]

Sleuth, be very careful of antidepressants. I think my gp has had me on every one on the marked. He thought I was depressed and that was the reason I could not sleep.

I took Ambilify...the only thing that happened was diabetes. Read the warnings on the box. He changed me to another one that I thought was going to kill me. (I am not being over dramatic). I don't remember the name but it started with an "s"

I think the antidepressants are right in there with the statin drugs for cholesterol. The sales people really must be pushing them. It has been my experience that they do not help with RLS. I am currently on Lortab 10/325 and Mirapex. I do get the pain usually late afternoon and at night.

I have a friend, her doctor wanted to put her on an antidepressant because she could not sleep. She told him she wasn't depressed, she was just po'ed because she could not sleep. I think he put her on one of the new sleep meds on the market..

I won't go any further. Just be careful with the antidepressants. They can really mess with your body, unless you really need them...Pat

[Sleuth]

Thank you.

I have suffered from depression my whole life. I have been on anti-depressants for over 40 years. I am 66 now. Abilify is an anti-depressant for bi-polar disorder, which I do not have. They now give Abilify to patients with depression if their usual meds are not working. They believe it helps those meds work better.

Right now I am not going to take any meds for my RLS because of my disasterous experience with Abilify. I did try Requip a few years ago, but it didn't work.

The most recent doctor I went to wante me to take a drug for Parkinsons Disease that had no been approved for RLS. I refused to take it. I am not going to experiment with drugs. Between the side effects and the possibilities of making my condition worse, I am petrified of doing that.

[ViewsAskew]

Sleuth,

It sounds like you are in a tough position.

For some reason, some people who take anti-depressants immediately or over time get or have worsened RLS. Only a few studies have been done, so more needs to be done to be sure which ones, why, and how much. Initial studies seem to show a max of about 10% problems for RLSers taking antidepressants.

That said, there are a few people who have strong reaction similar to yours - immediate increased RLS after taking an antidepressant . The doctors say that the RLS should reduce back to the original level over time, but anecdotal accounts seem to indicate that for a very few people, the RLS is worsened for a long time. That is very rare. And, it's not "proven" by the medical community to be caused by the antidepressants; rather believed to be that by the people who it happened to.

Per the RLS drugs, you are definitely in a tough spot given your concerns about only taking a drug approved for RLS. There are few drugs approved specifically to treat RLS; as of three years ago, there were NONE. However, over 25 to 30 drugs are used to treat it. Most of us rely on the doctors' experiences to guide us. If we didn't try things that weren't specifically approved for RLS (but ARE approved by for other disorders), we'd have nothing to try. Doctors working for/with the Mayo Clinic created an algorithm of which drugs should be tried in which situations. They are RLS doctors most of us trust to know the drugs that work and the ones that do not.

I can see being afraid of trying these - in fact of trying any drug.

If you can manage your RLS well enough that you have reasonable quality of life, then I doubt I'd try any drugs. But, if you are not sleeping, cannot do activities you could before or that you like doing and miss, if your relationships are suffering...that makes things a lot more difficult.

I hope you find the help you need and that your RLS gets under control.

[Sleuth]

It doesn't interfere with my sleep. I take a few tranqs and I fall asleep. I wake up frequently, but always did that. I just go back to sleep. My problem is whenever I set down to relax. I cannot do anything I used to do. The only time I can sit for long periods is when I'm at my computer.

I never know when I'll have an attack during the day, so cannot make plans for anything involving sitting. I can't travel anymore. I flew from NYC to FL to visit my sick mother and had to stand in the back of the plane for the entire trip each way.

I am severely depressed about this. I live alone and not being able to solialize like a normal person has isolated me tremendously. I was looking for a support group in NY, but there isn't any.

Sorry for being so negative, but I am feeling rather despondent about this whole thing. I think I'm coming to the realization that this is here to stay. I kept thinking it would go away. Now I know it won't and I have to learn to accept that. That is a very painful process.

[Polar Bear]

Hi Sleuth, I am 59 yrs and have had rls for 30 years. At present I use requip to cover for 24/7 and tramadol to supplement from around 6pm to midnight.

You say that some time ago you tried requip and it didn't work. I wonder if you were ever on the correct dosage, and also if you ever tried taking it in different ways. i.e. split doses,

I suggest letting doc advise using the Mayo Algorithm.

[Neco]

I have to agree here, it sounds like you are really down.. And you need to find a good doctor that will get you the proper medication, and not just try to stuff anti-depressants down your throat because you're feeling down.. Seems too many docs treat the effects and not the cause because they just don't get it..

The Mayo Algorithm combined with a good doctor who understands, is going to be the best - and only ally you are going to have in the fight for relief from RLS symptoms.. But at least you've come to terms with the fact it is not going to go away, now you just need to get up the strength to do something about it.

The only other treatment that might consistently work, is marijuana. If you have a source, and that kind of thing doesn't bother you, then it is likely the only non-pharmaceutical solution that will ever work consistently.

In the end, only you can make the choice about what is right for you. But I hope you don't go untreated for much longer... My RLS is bad enough that if I were ever cut off from medication for a week or more I would go insane and either try to amputate all my limbs, or want to kill myself.. It can be just as mentally damaging as depression or other serious mental illnesses over time, so getting good treatment is imperative for your overall health..

Once you find a med that works, you will wonder why you went on so long without it, and will likely have your life back

[Sleuth]

From reading these postings, it seems that there is no relief through medications. Maybe I didn't read correctly, but it seemed as though people try a drug or cocktail of drugs, only to have them work for a week or two and then begin the search all over again for another drug. Then I hear that some of these make the symptoms worse. I am petrified to try anything.

Am I wrong in what I read?

Now I am having a hard time going to sleep. It is only getting worse.

Sleuth

[Sleuth]

Marijuana helps? My pot smoking days are long behind me.

I don't even think you can get marijuana here for medical reasons. Even if you could, I don't see that working for me because of the other effects of smoking pot.

Right now I'm trying to find some support group, but there are none in NY. I can't even find a therapist who deals with RLS. I have no family or friends and am trying to deal with this by myself. I can't talk to anyone about it because they don't understand how crippling this illness is. They don't even think of it as an illness.

Sleuth

[SquirmingSusan]

Hey Sleuth,

There IS relief through medication, but sometimes it takes a while to figure out what works for you. Most people (maybe 80% or so?) get great relief from Mirapex or Requip, and it works for them for a long time. We usually don't hear much from those people in this forum because they're feeling better.

It seems like most of us here in this forum have had issues with the dopamine agonists, and have had to move on to other medications. Many of us have had augmentation from the drugs. That doesn't mean you will - and if you know what to watch out for, you can switch meds before it gets too bad. Some people switch between Mirapex and Requip, and continue to get results.

If those don't work for you there are many, many options. Anticonvulsants, opioids, and a variety of other meds are available to treat RLS. Most of us who take opioids get excellent symptom relief. It just can be a hassle to find a doctor who is willing to prescribe them. The key is a good doctor who will READ the Mayo Clinic Algorithm, and be willing to prescribe whatever it takes.

You don't need a therapist who works specifically with RLS to be helpful - find one who works with people who have chronic illnesses. You may also want to check out
[url]butyoudontlooksick.com[/url] You'll find a lot of help there for living with an illness.

[Polar Bear]

I get relief from requip and tramadol. Not 100%, but not bad (apart from the odd glitch).
Also, I don't have access to a support group, or an rls expert. But, my doc works through the Mayo Algorithm which I took to him, and that is a big bonus.

[mackjergens]

I have been able to control my rls for almost 9 yrs with hydrocodone and Ultram(tramadol). Both are pain meds, hydocodone is a controled narcotic and ultram is not.

please do not give up, keep plugging along until you find a dr and a med that will help you control your rls. Most of the RLSers on this message board have gone years without finding help from a Dr. I lived with nightly rls for almost 30 yrs before finally finding a Dr to help me. So just remember there is help.

First educate yourself to all the pros/cons of rls, read and print out the info of the foods/med/etc that can make rls worse. keep with you at all times, and then find the list of drugs used to treat rls and print those out.
There are many great rls websites. The one I really like is www.rlshelp.org
There are many OTC meds that can make rls so much worse, even cold meds or cough syrup. so many things to know about rls. READ as much as you can and if your Dr is not willing to help, then find another Dr.

[Sleuth]

Where can I find a copy of the Mayo Clinic Algorithm. I Googled the term, but can't seem to find anything that makes sense.

The two neurologists I went to who specialize in RLS wanted me to deal with my depression first. They wanted me to find the right anti-depressant(s). I'm confused because I'm reading that anti-depressants can negatively affect RLS symptoms.

These doctors are affiliated with Columbia-Presbyterian Hospital and Beth Israel Hospital, both in NYC. If I'm not mistaken, Columbia-Presbyterian Hospital is a top notch hospital in this area.

[Polar Bear]

There is a link to the Mayo Algorithm at the bottom of Zach's posts.

I think perhaps Views had a link on her posts.

No doubt someone will very quickly give you a definite link.