Horizant$$$$$$

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Dsinger
Posts: 2
Joined: Wed Nov 12, 2014 9:30 pm

Horizant$$$$$$

Post by Dsinger »

Good evening fellow RLS sufferers and concerned readers. May I please say first that I am not familiar with this forum and I hope that I'm doing something right. I ask that I may take a little of your time to relay some experiences with you and hopefully save someone some grief and suffering. My unfortunate credentials are that I'm 66 years old and have had RLS/WED for over 35years. It has morphed many times and is now in the advanced or severe mode. All drugs have been tried by 6 Neurologists over the years and the last few years have been very rough. The NEUPRO patch was effective until they started eating my skin at the site where applied. I understand these types of reactions are " fairly common "but the medicine in the patch was pretty effective. I still had to boost it with Requip for total relief. Recently, the newest Doctor in Houston tried me on 'HORIZANT'' and it is early but the results are somewhat promising. This med is ideally most effective when Requip has been purged from the system completely {which is no picnic as you can well imagine.] The cost of HORIZANT is another story completely. Presently taking 1200mg HORIZANT and two Hydracodones nightly to achive interrupted sleep, but sleep and minimum pain nonetheless. Vivid dreams are the only side effect so far and sleep is in 2hour increments. I can remember when the RLS did not hurt and only was "uncomfortable" , but now there is almost unbearable pain with the spasams.I never thought it would get this bad and I fear the future greatly. I feel that Requip {at too high a dose} is partially to blame for this and please be advised that this type of dopamine agonist should not exceed 6mg per day. My ignorant,uninformed,egotistical, Neurologist had me on 12mg for 2years. Way too much!!! As Dr. Allen {with JOHNS HOPSKINS university} said to the foundation and in his letters to members.....I quote "by prescribing high doses of Requip we took a bad disease and made it worse." He is an expert with RLS and he is very correct. .Requip/Ropinirole is great in mild cases at very low doses ,generally,my in my humble opinion. The HORIZANT$$$$ has to be used and not any other form of Gabapenten. The cost ,by-the-way is $600.00 for a 30 day supply. It took me a month of fighting with "Humanna" to get them to cover the Med and it still has me over $100 per month poorer.During the course of trying so many drugs over the years Gabapenten was tried and it actually made the RLS worse for me. Of course we all react to drugs somewhat differently as you know. One last tid- bit to share with you if you will allow me to. Three different Neurologists have made this word-for word statement to me ......."You know there are worse things than RLS."........................G O O D L O R D!!!!!!! No kidding?????? I think we all know of the horror of ALS, Parkinsons,cancer,Ebola and countless other diseases but we are in the office to get help with RLS you schmuck!!! I'm personally finding that RLS , in the severe mode, shortens the list considerably and those of you reading this will surely agree. I'm really curious about the suicide rate with this crap. No studies on that I suspect....Sorry to have taken up so much of your time and thanks very much for giving me a read. Hope this helps someone and may God bless all of you out there. ..........................David S.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Horizant$$$$$$

Post by Rustsmith »

David, great first post with lots of useful information. Glad to hear that you have achieved control using a combination of Horizant and hydracodone and that you appear to have a doctor who understands RLS/WEC.

Unfortunately, both your story of progression of the disease and issues with specialist physicians who are not up on the latest information about RLS/WED are far, far too common.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Horizant$$$$$$

Post by ViewsAskew »

Actually, the max does of ropinerole is even lower! Even initially, the max was 4.5 mg a day. But, as of a few years ago, all the 'in-the-know" RLS/WED docs have agreed that the max should be more like 1 mg a day to avoid what you went through.

Ten years ago, I went through what you did - not exactly, but similar enough. I decided to stay here, even after it was better, to try and help let other people know about these problems and help people, especially when their doctors didn't know any better. Each week I hope I'll never see a post like your again. And, each week at least one new person joins here who is going through what you've gone through. It makes me mad, sad, and determined.

I truly hope that some day in the near future we will have educated more doctors and that they will not keep getting people into this mad DA mess.

I honestly can't imagine a doctor saying that to anyone - so sorry you had to hear it. And, I imagine that if they had it (especially the augmented form) that they'd never say it again!

Welcome to the board and I hope the Horizant works well for you. For what it's worth, some people can use gabapentin successfully. Fortunately not all of us need the expensive gabapentin encarbil (Horizant). At least the expensive version is there for those of us who don't get relief with regular gabapentin. Small comfort, I know.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Yankiwi
Posts: 548
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Horizant$$$$$$

Post by Yankiwi »

Hi David, you are in the right place for understanding and informed advice from others who have been or are where you are now. I feel so lucky that I suffered with nightly RLS for over 20 years (and severe for 10) unmedicated and when I was finally offered ropinerole by my GP I found this forum before my dose was increased too high.I'd really hate to be going through what you are right now and I'm almost sure I would be had I received medication many years ago.

JimmyLegs44
Posts: 90
Joined: Thu Oct 01, 2009 5:24 am

Re: Horizant$$$$$$

Post by JimmyLegs44 »

Dsinger wrote:Three different Neurologists have made this word-for word statement to me ......."You know there are worse things than RLS.".

I used to think to myself "If RLS is the worst thing I get in my life, I can live with that". I don't think that way anymore. Those ignorant neurologists wouldn't either if they suffered with RLS (especially the augmented version that they inadvertently helped bring on) for as long as us.

In terms of drug cost, I remember the days, not so long ago, before Mirapex went generic, shelling out major $$$ each month (albeit unwittingly for a drug that was actually making my RLS worse, and, as it turns out, trying to get off such drug is as close to living hell as I can imagine). Hopefully it won't be long before Horizant goes generic and you can at least get some financial relief.
The best way out is always through. - Robert Frost

JimmyLegs44
Posts: 90
Joined: Thu Oct 01, 2009 5:24 am

Re: Horizant$$$$$$

Post by JimmyLegs44 »

JimmyLegs44 wrote:"If RLS is the worst thing I get in my life, I can live with that". I don't think that way anymore.

I should add, not meaning to tempt fate :)
The best way out is always through. - Robert Frost

Rustsmith
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Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Horizant$$$$$$

Post by Rustsmith »

Three different Neurologists have made this word-for word statement to me ......."You know there are worse things than RLS.


This is a rather heartless thing for a doctor to say to a patient and possibly even unprofessional, even though true. Especially considering the rather distorted perspective of humanity that a neurologist must see based upon the variety of ailments that come to them.

RLS/WED is a miserable disease no doubt about it, but sometimes we need to take a step back and look at it to keep things in perspective. My wife of 42 years has had MS for that entire time period. As miserable for the six years that my RLS was severe and untreated (even though I was seeing a neurologist and was complaining about my problems), I would periodically compare my life with hers and would feel fortunate. No matter how sleep deprived and miserable I felt, I was physically able to do things that she could not. Sleep deprivation might drive me crazy, but at least my body could still function.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

JimmyLegs44
Posts: 90
Joined: Thu Oct 01, 2009 5:24 am

Re: Horizant$$$$$$

Post by JimmyLegs44 »

You are absolutely right, Steve. It is vitally important for us to put our suffering in perspective, as there are those that have been dealt a worse hand than us. It's similar to when a bad storm hits your town (which actually happened to my town last night)...your property might suffer a little damage, but some aren't nearly as fortunate and have significant damage. Still others are somehow spared and suffer no damage whatsoever.

I think it also helps in dealing with our own suffering if we can find a way to help those less fortunate than us.
The best way out is always through. - Robert Frost

Polar Bear
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Posts: 8799
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: Horizant$$$$$$

Post by Polar Bear »

WE know that our sufferings bad as they are, are put into perspective when we are sensible and consider matters logically.
But just sometimes.... in the middle of a long and tortuous night...... perspective and sensibility flies out the window :roll:
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Horizant$$$$$$

Post by Rustsmith »

Who ever said that anyone who is seriously sleep deprived can be expected to be sensible, especially when no one else is around? :lol:
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Horizant$$$$$$

Post by ViewsAskew »

I hear your point, Steve. My best friend has 3 autoimmune disorders - they are clearly affecting her in more ways than the RLS/WED affects me.

I am not sure it helps to compare to each other or to anyone else - whether in the light of day or dark of night! I am not sure it helps us in any way. In general, it likely does help to realize that somebody always has it worse. Someone also has it better. that may help us put things in perspective. It can also help us feel worse about ourselves, minimize our own issues, make us feel less than adequate, and create other emotional feelings that are not positive. Science sides with not comparing! it's just not healthy to do.

we don't all feel pain the same way - science shows us that some of us experience pain much more acutely, for example. We don't have the same emotional resilience. So, what one of us might feel is not an issue, another might feel very strongly.

I honestly think the only comparison we should make is to ourselves. Is our life easier? Harder? Can we do what we need to? How are our relationships compared to how they were? Can we do the same things we used to?
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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