RLS Interview

Juls31 · Post by **Juls31** » Wed Jan 20, 2010 12:25 am

Hello, my name is Julie. I am a student at Ohio University. I am writing a paper for my junior composition course about RLS and I am hoping to find a wide range of individuals who are willing to answer a few questions for me that I could use as quotes throughout my paper. I would like to show my fellow classmates that RLS affects people of all ages, race, etc., however, I am hoping to interview some college students with RLS to show the class that this is important information for them as well. If you would be willing to answer some questions please email me at jh211707@ohio.edu. Just let me know that you are from the RLS discussion board.

Please help me out! I believe quoting real people with RLS will make my paper fantastic. I would really appreciate the help.

Thank you,

Julie

ps. I have RLS too.

Post by **ViewsAskew** » Wed Jan 20, 2010 12:34 am

Hi Julie, welcome. I hope you get a lot of responses. If you still need some people, remind us.

Neco · Post by **Neco** » Wed Jan 20, 2010 5:12 pm

I have sent a response.

Post by **Polar Bear** » Thu Jan 21, 2010 4:29 am

Yes, I also sent a response. Julie says she will provide a copy of her end result paper.

Betty/WV · Post by **Betty/WV** » Thu Jan 21, 2010 10:49 pm

I sent a response also, to Julie. Looking forward to reading her paper.
BETTY/WV

Juls31 · Post by **Juls31** » Mon Jan 25, 2010 7:23 pm

Thanks everyone! I really appreciate all of your help.

Some news about the paper - I will be focusing on depression in relation to RLS.

Post by **Polar Bear** » Mon Jan 25, 2010 9:26 pm

Hi Julie,
that will be very interesting, cos sometimes we have a bad day (as everyone does), then perhaps when there is little or no sleep it runs into another bad day, and then the nights kinda run into one another, how often was I up last night.... or was that the night before.....etc. etc. Sometimes when in a bad sleep spell its hard to know it ones low or weepy mood is the result of exhaustion or if there is a touch of depression - or both.

Do you have a time frame for your report?

Juls31 · Post by **Juls31** » Wed Feb 03, 2010 1:33 am

The time frame is not set in stone but it is soon - I will be presenting my rough draft tomorrow morning.

I feel the paper is turning out really great - after reading through my interviews ... I decided to make the task of my paper...well I will just copy and paste it:

Task: to make my reader aware of RLS and give them an understanding of how individuals with RLS suffer. More specifically, If my reader has family, friend, or even a complete stranger tell them that they suffer from RLS – my reader will be sympathetic, unlike the many people who are uninformed about RLS and the degree of suffering one goes through on a daily basis.

I decided I wanted to spread awareness because many people spoke of loneliness because they had no one to talk to ... and also people not believing RLS was a serious problem... Anyway ... so that is what I am rolling with!

Post by **Polar Bear** » Wed Feb 03, 2010 5:22 am

It will be great to see a paper which explains the physical and emotional suffering clearly, so that a non sufferer can understand.

Betty/WV · Post by **Betty/WV** » Wed Feb 03, 2010 10:18 am

Juls31: I'm looking forward to reading your paper also. I agree with Polar Bear, that is just what is needed a paper explaining how RLSers feel, and written so non-RLSers can understand what we deal with on a dailey basis. Because there are few that really understand the seriousness of RLS. :cry:

You are doing a great service to all of us here. Thank you so much. And I can't wait to read it.

How long is your paper, and how are you going to get it to us?

BETTY/WV

Juls31 · Post by **Juls31** » Wed Feb 03, 2010 5:11 pm

Hey everyone! I don't want to get your hopes up and think this paper is going to be awesomely amazing ... it is 4 pages long (as of right now)... and considering my audience is my professor and my classmates... the medical aspects are not that deep... but I just don't want you all to be disappointed!
I will email the paper to whoever wants it. This morning my professor looked it over and he loved it... I just have a couple of things to add.
It would be helpful if any of you would email or just post on here some info about medication costs... on average or the highest you have had to pay monthly...
Anyway... I'll be adding more info here and there until next Wednesday morning.

Alright so I hope to hear from some of you soon! Thanks again for your help

I can't say it enough!

Post by **Polar Bear** » Wed Feb 03, 2010 6:32 pm

Hi Juls, I am in the UK so can't comment on US costs but have seen comments where some sufferers have been unable to get a certain medication because of the high cost.

Here in UK, it is somewhat different, at present each item on a prescription has a charge of £3. If you have many medications it can be cheaper to buy a 4xmonths certificate, usually if you are on more than 5 medications per month.

Prescriptions have no charge for those over 60 years, or for children.

Good luck with your paper, glad your professor liked it.

Post by **ViewsAskew** » Wed Feb 03, 2010 6:51 pm

If you have insurance, the meds aren't too bad, my worst costing $45 for a non-formulary a couple years ago.

But, now that I have no insurance, it's a different story. I paid $130 for one medication and $50 for the other (I am using 3 different ones, alternating to prevent tolerance). I had some left over of the third one so am not sure what it would cost me, but it's not generic, so I am guessing it's significant.

These days Requip and Mirapex are both generic (Mirapex was ordered to be as of Jan 2010, that is, but I've not checked to make sure it is). In the past, I can recall people coming here to say that they couldn't afford their medication. You might be able to do a search on the words afford and medication or something like that and see if you can find what the costs they couldn't afford.

Neco · Post by **Neco** » Wed Feb 03, 2010 8:58 pm

I honestly can't recall the most I've paid for my RLS specific meds.. I've been on so many, although they have all been in the same range.

The absolute highest I can remember paying with certainty is somewhere between $50 - $60 for a months worth of Hydrocodone (Vicodin). The 5/500mg's are generally pretty cheap.. #120 of them should run around $30 or so if you go to a decent pharmacy with good prices.. I got #90 of 10mg pills before which was around $45 or more. It was a couple years ago so I am not certain.

But in general most opiates tend to be inexpensive medications compared to other RLS meds, especially if they are non-generics.

These days, I almost never pay more than $15 for #110 of my Methadone 5mg pills. My local pharmacy tends to be cheaper on the whole. It can be $20 or more elsewhere, even Hydrocodone can be stupidly expensive at some place like Walmart.

Oxycontin on the other hand can be stupidly expensive at over $100 or more for a months worth.

Suboxone as well, will easily cost a few hundred a month without insurance.

Also, I would like a copy of the paper too.

Betty/WV · Post by **Betty/WV** » Wed Feb 03, 2010 9:47 pm

Hi: As to the cost of RLS medicine. Mirapex is $85.89 (full cost of drug). For 1 month. I have a $175 deductible. After I have met that I will pay $44.66 a month for the Mirapex. I hope it doesn't go up. Along with that I only pay $6.87 for Tramadol and about $18.00 for 3 months of Klonopin. So the Mirapex is the most expensive. And it has went generic, but the cost hasn't went down. And I am supposed to take Protonix for acid reflux but it is $87.00 a month and my Part D doesnt' cover it at all. My doctor has been giving me samples.

But I take other meds. for high blood pressure, high cholestrol, plus my husband is diabetic and takes meds for that, and also enzymes for a pancreas problem, which is quite expensive. And an inhaler (Combivent) for COPD. So add them all up and it is scary. But he is a veteran and get his med through the VA at a reasonable cost.

Plus we pay $17.00 and $24.00 a month (round figures) for our Part D plan. And we pay around $114.00 each a month for Medicare. I hope I haven't forgotten anything. But sometimes, I get afraid that we won't be able to afford our meds. And without Mirapex I would be a total mess. At least it helps about 95% with the RLS.

I hope I haven't went overboard and gave you information you weren't interested in.

Please don't forget to send me a copy of your paper. I'm glad you got a good report on it.

Take care. BETTY/WV