Misery for the Uninsured (or underinsured)

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
sarahjj
Posts: 40
Joined: Tue Jan 27, 2009 6:58 pm

Misery for the Uninsured (or underinsured)

Post by sarahjj »

It is so true that we are guinnea pigs. It is also so true that quality of life has been severely compromised. This is what I have been reduced to:

My doc prescribed Lyrica. I can't afford to buy the pills because one month supply costs me $327.75. Obviously, I am uninsured. My father-in-law takes Lyrica, a higher dose then what my doc prescribed. He gave me a bunch of his Lyrica, but it comes in capsules. So now, because I'm supposed to take less then one of his capsules, I have to pull the capsule apart, dump out the powder, divide it into what I THINK is the correct dose, pour it back into the capsule and take it. However, sometimes I don't have a capsule to pour the powder back into, so I have to stir it into a beverage and drink it, with an extremely bitter after taste. I found a website that sells empty capsules but don't have any money in the bank to buy them. I can't work to make any money because of my RLS. How ironic. This has become such an evil cycle. And to boot, my doc knows that i don't have insurance and can't afford office visits. She was willing to work with me via email at first, but now she's giving me a hard time. She is not comfortable making med changes over email, and unfortunately we have had to make many changes because we can't find the right cocktail. I tried applying for pharmaceutical assistance from the various companies I take med from, however it seems that I make too much money to qualify. This is where the story gets good.

My husband died suddenly 4 years ago. My son and I are on social security survivor's benefits. I lost my job 3 years ago and haven't been able to work since because of my RLS. My son is on state health insurance, but I have not been able to qualify. We don't make enough money to survive with our basic necessities. However I DO make too much money to qualify for ANY financial aid programs. I applied for private health insurance and was denied because of my weight, RLS condition, Depression and anxiety diagnosis and resulting medications I have to ingest everyday. How is this right? I'm blocked every way I turn. I know there are others out there who are uninsured like me. But I don't personally know anyone. So frustrating.

Thanks for letting me vent.
~Sarah~

badnights
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Post by badnights »

Hang in there, Sarah. Is the pirated Lyrica working for you?

SquirmingSusan
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Post by SquirmingSusan »

Sarah, that's all just crazy. And I worry about being in a similar situation if my husband were to die, and he's come very close a couple times in the last few years. My daughter has a couple disabilities and my son may have a sleep disorder. It's a scary system we have here in the US!

Is there any way you could qualify for disability benefits? You would probably have to seek them retroactively to when you could work, and I have no idea if that would be more to live on than survivor's benefits.

With the Lyrica - you can just cut a capsule in half with a pill cutter. Then you can use both halves. Just swallow quickly. :? But there are also certainly less expensive medications out there if you can get your doctor to prescribe them. Have you tried any opioids yet? Hydrocodone comes in generic and is usually pretty effective. Codeine can work as well. Gabapentin comes generic and works similarly to Lyrica, but I don't remember what all you've tried. It would really help if your doctor would work with you.

Hang in there.
Susan

ViewsAskew
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Post by ViewsAskew »

It really is crazy isn't it? As you are, I am uninsured. I've only been for 4 months, so it's a new reality for me. And, as you are, I am uninsurable given the current rules/laws in the US.

I have written and erased about twenty paragraphs because none of them have accurately conveyed my feelings. Just know I have empathy for you and what you're going through.
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.

runkrun
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Joined: Fri Jun 12, 2009 2:54 pm

Post by runkrun »

Sarah, Have you tried getting samples of Lyrica? Also many of the drug companies have indigent programs where you get your medication free. Your physicians office/nurse can fill out the paper work and call the drug rep in your area. I agree w/ Susan about maybe trying less expensive medications first. I'm currently on Lyrica, and yes it works great, however I had been on Neurontin(Gabapentin) for 11 yrs w/ much success! What medications have you tried?

Neco
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Post by Neco »

You need to tell your doctor about your financial problems ASAP and see if he can't try something else..

It doesn't even sound like the Lyrica you are taking is working for you, if you can't even work ??

He won't try opiates? They are insanely cheap compared to Lyrica. Well most of them anyhow.

re:Susan - capsules are plastic and hollow and have the powder form of medication in them. You are thinking of caplets. You can't cut a capsule in half.


In any case, get in and talk to your doctor ASAP, or on the phone or something.. At least ask them to get you the paper work so you can apply to the drug company to hopefully give you some free medication..

Or at least ask him if he could try prescribing you Tramadol or another opiate instead.. They are so much cheaper, and the Mayo Algorithm and other medical articles completely backup the recommendation for opiates when other medications are not possible for whatever reason.

SquirmingSusan
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Post by SquirmingSusan »

Yes, Zach I've cut capsules in half. It's quite possible to do without even spilling the powder inside. I did that with gabapentin capsules and I think with Lyrica. Just use a pill cutter and slice them right across the middle. Then stand them up on end so the stuff inside stays put until you take it. And capsules are usually gelatin, not plastic.
Susan

Neco
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Post by Neco »

Well whatever they are, they look plastic

sarahjj
Posts: 40
Joined: Tue Jan 27, 2009 6:58 pm

Post by sarahjj »

You all are full of lots of great information. Thank you!

To answer some of your questions....I have been taking Requip for the past 3 years with success. I am up to 2mg at night. It makes me so tired, I can't take any of it during the day and still have enough coverage at night. I also take Zoloft for depression and panic disorder. I had been taking Gabapentin but was still having such severe RLS attacks. So we are trying the Lyrica instead. This was at the suggestion of Dr. B who was gracious enough to answer my email. The Zoloft does effect the RLS, but the theory is that if its working, don't change it and work around it to treat the RLS. I cannot take Tramadol because supposedly it doesn't mix well with the Zoloft. My doc wanted to put me on Methodone but I have such apprehension about that and I'm just not ready to go that route. I want to make sure I exhause every other option first. Please understand.....my hesitation to take the methodone is a result of my panic disorder. Rationality just doesn't satisfy the panic and my fear of methodone has been drilled into me for years. I know that's where I'm headed. I just need to wrap my brain around it.

Oh, and I make too much money to qualify for the drug companies programs. That's the sick part. The Lyrica isn't working yet. I am on 100mg, 2 times a day. I sent my doc an email asking to bump it up to 150mg, 2 times a day. If that doesn't work, I really don't know where to go from there. My doc knows my financial situation and has nothing to offer in regards to solving the medication issue. I will have insurance in July, but until then I have to work this out.

Also, when I get insurance, I want to seriously consider traveling to see Dr. B in CA. I live in PA, so I know its a long trip and one that will be miserable dealing with RLS. However, I'm thinking it would be worth it. Thoughts on that?
~Sarah~

ViewsAskew
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Post by ViewsAskew »

sarahjj wrote:Also, when I get insurance, I want to seriously consider traveling to see Dr. B in CA. I live in PA, so I know its a long trip and one that will be miserable dealing with RLS. However, I'm thinking it would be worth it. Thoughts on that?


Totally worth it from my perspective. I, also with no insurance, went to see him in November. Susan went in October. Both of us are very happy we went. The flight is a total of 4 hours or so...in the scheme of misery, spending 8 miserable hours is like 2 nights of mine for the chance of hundreds of happy ones.
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.

SquirmingSusan
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Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
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Post by SquirmingSusan »

Flying out to see Dr. B was one of the best things I've done because I finally got some answers AND some treatment. He's great about responding to email and phone calls. My kids and I are going back out there in a few weeks because they both have some symptoms of narcolepsy and I just don't want to deal with the local sleep doctors.

And... We're going to Disneyland :D
Susan

ViewsAskew
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Post by ViewsAskew »

How fun! Enjoy Disney.
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.

Neco
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Joined: Tue Oct 04, 2005 10:18 am
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Post by Neco »

My guess is Dr. B may likely suggest Methadone too.

It works so great for so many people, and you shouldn't have to stop taking the Zoloft either.

Just saw my new doctor today.. took blood and made me give a urine sample, meh.. But I got my script for the next month, and can call the office for the next two when I need them.

Unless they find some excuse on the drug screen for some whack reason.. All I take otherwise is OTC cold medicine. But I heard Dextromethorphan can cause false positives for opiates, or cocaine in particular or something like that... I dunno..

Oh well.. you guys know I'm not a coke head... right? lol...

sarahjj
Posts: 40
Joined: Tue Jan 27, 2009 6:58 pm

Post by sarahjj »

So amazing! I had my Lyrica dose upped to 150mg 2x/day last week. This past Monday, I went the ENTIRE day without an RLS attack. I haven't done that in at least 5 years!!!! WOW!! It felt so good!! So, what did I do?

- I sat on the couch and read a book for 20 minutes
- I sat on the floor and played a board game with my son
- I sat and helped my son do his homework
- I sat during dinner
- I laid in bed leafing through a magazine
- I cuddled with my honey

It was a magical day. I haven't been able to do any of those things in at least 5 years. I felt so good.

Unfortunately that didn't carry through for the next 2 days. But it gave me hope. Hope that this can be controlled. I'm a happy woman :D
~Sarah~

badnights
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Post by badnights »

yay! It's so great when there's relief.

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