US Public Comment on Opioids

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.

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Rustsmith
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US Public Comment on Opioids

Postby Rustsmith » Sat Jan 05, 2019 7:15 pm

If you take an opioid for your RLS and live in the US, PLEASE participate in this public comment opportunity. This is a chance to change the federal government's approach to opioids and get a change to the current CDC "guidelines".

Decision-makers at the US Department of Health and Human Services (HHS) are requesting comments from patients who use opioid therapies to manage their chronic conditions. Agency officials want to hear from RLS patients on how they manage their condition, and barriers that are affecting their access to treatment. Make your voice heard.

https://rlsfoundation.blogspot.com/2019/01/action-alert-you-must-speak-out-by.html?fbclid=IwAR3eIUyEfaFPQTOt_azrxm1VIrUd4PxizkEFCqjo6cWYFbMICeuO1Z4c3xo
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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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Re: US Public Comment on Opioids

Postby ViewsAskew » Tue Jan 08, 2019 3:18 am

Thanks for posting! I saw it when I was out and about and forgot to post when I came home!
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.

Rustsmith
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: US Public Comment on Opioids

Postby Rustsmith » Mon Feb 11, 2019 11:55 pm

If you haven't already participated in the public comments to the US HHS task force for modifying the CDC opioid guidelines, please do so NOW!!! Every voice counts on this matter. Don't rely upon others. You can even have your comments signed as Anonymous.

There are currently almost 1300 comments (both for and against) and over 100 of these mention RLS. This means that our responses are disproportionate to the chronic pain community, but HHS already knows about them. The draft report doesn't even mention RLS as another condition that requires opioids (they do mention sickle cell anemia) but does appear to be a major step in the right direction. We need them to understand that we also need help and that we need to be mentioned.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

QyX
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Location: Berlin / Germany

Re: US Public Comment on Opioids

Postby QyX » Wed Feb 13, 2019 3:39 am

Opioids are one of the best treatment options for any kind of RLS, especially when you have daily symptoms that can be described as painful.

I've taken opioids for over 6 years now and they are still effective while my dose is stable. After monitoring the stories of others, I can only conclude that opioids are a safe long-term treatment for RLS with low risk for addiction and tolerance. And even when you develop some tolerance over the years, there are plenty of ways to manage, including switching to other medications for a few weeks to "reset" the receptors and the tolerance.

Especially Morphine would be a very cheap treatment option, compared to those expensive dopamine agonists and antiepileptics like Lyrica or Horizon.

Personally I would not be able to life at all (!) without opioids.

Also after two weeks of daily THC at night I noticed that Cannabis has strong analgesic properties when it comes to RLS related pain symptoms. I was able to cut my dose by 1/4 in the past week.

I wish that every RLS patient had easy access to opioids. Compared to all the problems and side effects of the other drugs I believe opioids are the best treatment option for the more severe cases of RLS.

Would I life in the U.S. ... I most likely would not be able to get a prescription for the dose necessary to manage my pain. Somehow this is a scary thought. I am thankful that it is up for the doctors to decide which treatment I need and not state laws, my insurance company or the CDC.

Btw: we have similar guidelines for opioids and chronic pain. However here in Germany they are understood in the way were intended: as recommendations that need to be carefully adjusted and weighed for every individual patient. Nobody here would develop the thought that now our state governments use these guidelines and put them into law. Somehow it seems insane that every state has its own laws and regulations when it comes to opioid treatment. I see no reason why they should not be the same in the hole country.

I really hope the situation in the U.S. will improve for RLS patients in the next years.

EdSoFlo
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Re: US Public Comment on Opioids

Postby EdSoFlo » Mon Feb 18, 2019 6:50 pm

Thanks for the reminder, going to do this today. This is very important, and it’s key that we be clear that we’re utilizing opioids in a different manner altogether than the chronic pain community, at generally far lower doses, and that tolerance and misuse issues appear to be far less common among RLS users (though in actuality genuine opiate abuse among properly diagnosed and treated patients of ANY kind is quite low, far lower than the current hysteria would lead one to believe. That said it’s even lower in our particular community). The problem is that it’s become a political football, and politicians who actually care very little about the issue, and even less about the patient community, will exploit it, to say ‘look how tough I am on those horrible opioids!’ and we’ll be colllateral damage. When in fact the large majority of overdose deaths are from hardcore addicts/abusers injecting heroin obtained (obviously) on the street (which by the way is an opiate, not an opioid...they haven’t even named their ‘crisis’ correctly!) Well that is not acceptable, that’s not how medicine should be practiced in a civilized society, and we MUST stand up for our rights. For many of us this is without hyperbole close to a life or death matter. Stand up make your voices heard here, and to your representatives at both the federal and state level.

Brynmr
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Re: US Public Comment on Opioids

Postby Brynmr » Sat Mar 09, 2019 3:23 am

Too bad non opioid RLS patients can't chime in and have a say. Some of us will likely be prescribed opioids in the future for our RLS.

To these awful 'guidelines': 2 weeks ago I had a tooth extraction resulting in a dry socket (dry sockets are very painful). After I rifled through 15 tablets of hydrocodone, doctor told me pharmacy wouldn't fill any more so I spent 4 more days in pain til finally the doctor relented and filled a script for me.

Rustsmith
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Joined: Sat Sep 28, 2013 9:31 pm
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Re: US Public Comment on Opioids

Postby Rustsmith » Sat Mar 09, 2019 4:22 am

I have looked at some of the comments that have been made by RLS patients and there are a few that are from individuals who are not yet taking opioids, but expect to in the near future. Since this is a public comment forum, I wouldn't let the fact that you are not taking them at present deter you from adding your 2 cents. At worst, they ignore your comment and at best you would add to our count (which remains around 10% even though it is supposed to be for chronic pain).
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

Brynmr
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Joined: Sat Jul 21, 2018 3:15 pm

Re: US Public Comment on Opioids

Postby Brynmr » Sat Mar 09, 2019 5:14 pm

Thanks Steve. I submitted my 2 cents though I think it's more like 20 bucks. ;)

Werbers
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Re: US Public Comment on Opioids

Postby Werbers » Fri Mar 22, 2019 11:09 am

I just posted my comments. Please comment today if you use opioids or even if you don’t currently use opioids but have RLS. You may need them in the future and they could easily be taken away from us.


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