The FDA is about to change our lives

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debbluebird
Posts: 2386
Joined: Mon May 21, 2012 3:27 pm

The FDA is about to change our lives

Post by debbluebird »

I have recently been informed of a new proposal by the FAD, limiting long term opioids use to a maximum of 90 days for usage in the non-cancer patient. This appeared on Facebook by RLS Foundation. There is a link on Facebook, to follow in order to write letters to the FDA. http://www.rls.org/​page.aspx?pid=584
They need to be informed.
FDA
Michael Klein, PhD, Director
Controlled Substances Staff
White Oak Building 51, Suite 5100
HFD-009
10903 New Hampshire Avenue
Silver Springs, MD 20993

I for one have tried many medications to try and control my WED and PLMD. I don't like taking what I have to take in order to live and still get very little sleep. If anyone has any suggestions as to what I can do if I can no longer take Methadone and Tramadol, I'd like to hear it. The Parkinsons drugs augmented on me. I was a zombie with Valium. I feel like Methadone is the better evil over Oxycodone. This is very upsetting to me. DEB

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

Re: The FDA is about to change our lives

Post by ViewsAskew »

The post is as follows:
CALL TO ACTION
Are you an individual with severe RLS/WED who uses opioids to manage your symptoms? There is currently a petition by a group of pain specialists submitted to the FDA asking to limit long-term use of opioids to a maximum of 90 days usage in the non-cancer patient. If this possible action will affect you, please write a letter to the FDA and tell them why long-term use of opioids is important to your quality of life. Send letters to:

Michael Klein, PhD, Director
Controlled Substances Staff
White Oak Building 51, Suite 5100
HFD-009
10903 New Hampshire Avenue
Silver Springs, MD 20993

Link to it is here
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.

Polar Bear
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Location: United Kingdom

Re: The FDA is about to change our lives

Post by Polar Bear »

As I live outside of the US this does not apply to me.
However I fully support any objection to this proposal.
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

debbluebird
Posts: 2386
Joined: Mon May 21, 2012 3:27 pm

Re: The FDA is about to change our lives

Post by debbluebird »

Sorry, that I got it wrong. Ann, glad you set me straight. I tend to get stuff mixed up sometimes. Thanks, DEB

ViewsAskew
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Re: The FDA is about to change our lives

Post by ViewsAskew »

debbluebird wrote:Sorry, that I got it wrong. Ann, glad you set me straight. I tend to get stuff mixed up sometimes. Thanks, DEB


The link wasn't working right - just made sure it was.
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.

dogeyed
Posts: 441
Joined: Wed Apr 21, 2004 3:06 pm

Re: The FDA is about to change our lives

Post by dogeyed »

I started a rough draft of a letter to the FDA, pointing out the problem with all opiates being 90-day (some already are that are Schedule I and II, I think). But Lord knows when I'll finish it or if I'll even send it. My mind is confused these days. I think perhaps a counter-petition is in order, perhaps... and there are MANY other people who take opiate meds for stuff other than RLS, which I have a fractured back and need strong drugs, so IF there were a petition, it would be helpful to get it to folks who post on websites for tore-up back people and others who must take those drugs. Oh, I could go on and on about how unfair such a change would be, but suffice to say if I send a letter, I'll let you all know before I email it. GG
"It's not how old you are; it's how awful you feel."

badnights
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Location: Northwest Territories, Canada

Re: The FDA is about to change our lives

Post by badnights »

An interesting explanation of the reasoning behind the petition:
http://www.medscape.com/viewarticle/771692
(from last Sept)
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

dogeyed
Posts: 441
Joined: Wed Apr 21, 2004 3:06 pm

Re: The FDA is about to change our lives

Post by dogeyed »

DEB, that FDA site is a mess to get around in, but I found an email for our area (we live in the South) that I wroteto, and I'm sorry, I couldn't find that lis again for other areas to save my life, so maybe she would forward he others. Here's her email:
joann.pittman@fda.hhs.gov

My email was a jumble, I'm not in good health, but the idea of taking away thelittle bit of codeine #4 I take is almost more than I can take. And I've been thru eeveryhign, fractured back, peripherial neuropahy in feet and hand,s, breast cancer,and of ALL those things, i f they took away my med for RLS, I would go mad. I hope here are some men who will write tothem, especially thoes who are good writers, because I USED to be, but I'm disaled and old and can't do it right anymore. Anyhow, I jus wnated to help a little. GG
"It's not how old you are; it's how awful you feel."

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Re: The FDA is about to change our lives

Post by Betty/WV »

When I first went to this young neurologist, I could tell he wasn't up on WED/RLS but he accepted some literature from me, on the subject and he read it. So he seemed to be willing to learn about it. I take Mirapex, Klonopin and drugs for other ailments. Sometimes the WED/RLS seems to break through and I take a vicodin at those times. That isn't very often. I told him about the vicodin and he didn't want to give me a prescription for them. I tried to explain that vicodin was given for WED/RLS. Finally he relented and gave me a script for TEN. I stretched those out to last 6 months. Next time I went back to him he evidently had done some reading and said "you know vicodin is a recommended drug for WED/RLS----DUH. But still he is very hesitant in giving me a script for them. He has consented to giving me FIFTEEN. Give me strength to continue dealing with this "monster". Its been at least 50 years and I'm getting tired of it.
BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

Polar Bear
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Re: The FDA is about to change our lives

Post by Polar Bear »

If you made your 10 pills last for 6 months it's pretty clear that you aren't misusing them.
And now you've got 15 pills....... not much to be tackling the monster if and when he decides to attack in full force.
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

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Re: The FDA is about to change our lives

Post by Betty/WV »

Thats for sure. If I need to I will call him, if I run out. Same way with the Klonopin, but I have no problem getting a scriptfor that. Have been taking it for years and it can be just as addictive. I remember one doctor I went to years ago, He said, "I can see you don't have an addictive personality, you have been taking the same small dose of Klonopin for years.".
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

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