Excellent article on opioids

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jul2873
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Excellent article on opioids

Postby jul2873 » Fri May 03, 2019 2:47 pm

The New England Journal of Medicine and the CDC have put out articles admitting that the "one size fits all" for prescribing opioids has done immeasurable harm. And the comments after the article have many examples. None for RLS yet. Perhaps someone who has their opioids that were working well discontinued might comment?

https://www.statnews.com/2019/04/26/no- ... onic-pain/

QyX
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Location: Berlin / Germany

Re: Excellent article on opioids

Postby QyX » Fri May 03, 2019 3:53 pm

Yep, it is a very good article.

I just think that the authors of the guidelines could have seen all this coming. They knew exactly how the medical industry works and should have added an additional section explaining that indeed one size doesn't fit everybody.

As with many other problems in the U.S. it is just going from one extreme to another extreme.

I fear that it will take another 10 years for the current policies to be corrected.

Rustsmith
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Re: Excellent article on opioids

Postby Rustsmith » Sat May 04, 2019 12:04 am

Unfortunately, the CDC's admission of guilt was "buried" in the New England Journal of Medicine. When the initially published their guidelines, it was done with major press releases that resulted in coverage by the national news media, including the evening news by all of the major networks as well as all the major newspapers. Now that the admit that they are responsible for harming thousands of legitimate patients, the admission is only carried in a technical journal that is read by doctors. No press conference, no national media coverage.

And it took 3 years for them to admit this even though all of the patient advocacy groups have been screaming. Maybe I am too cynical, but my personal suspicion is that they only reason that they published the article is because the Interagency Task Force on Opioids (which is well above the CDC in the government organization structure) is about to come out with their report that is going to be very critical of the CDC guidelines and will reflect how legitimate patients are currently being hurt.

All this is important because quite a few states enacted the CDC guidelines into law, sometimes even being more restrictive. Without more media coverage, there will not be much pressure on those states to back off on their own restrictions.
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.

badnights
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Re: Excellent article on opioids

Postby badnights » Sun May 05, 2019 3:25 am

Agreed.
All this is important because quite a few states enacted the CDC guidelines into law, sometimes even being more restrictive. Without more media coverage, there will not be much pressure on those states to back off on their own restrictions.
And it's way harder to change a law than a policy.
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.

chuas2
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Joined: Wed Aug 06, 2014 7:14 pm

Re: Excellent article on opioids

Postby chuas2 » Mon May 20, 2019 12:14 am

This article (and the linked articles as well) support everything I told my pain medicine doctor. However, that didn't stop him from cutting off my narcotics (two hydrocodone 5-325 and one ms-contin per day). I'd been taking this dosage safely for over ten years. I was told that I "don't have a diagnosis...like cancer, or a lumbar puncture" was what he said (which I thought was odd, since lumbar punctures are carried out under moderate anesthesia or local anesthetics). The hydrocodone in the evening cut my occurrences of RLS in half, and helped with my chronic back and arthritis pain.

So I'm going to shovel in the gabapentin, hope for the best, but may cut off my arm (the RLS presents in my left arm and side). Heartless, cruel, and nonsensical, these CDC guidelines...

ViewsAskew
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Re: Excellent article on opioids

Postby ViewsAskew » Mon May 20, 2019 8:27 am

chuas2 wrote:This article (and the linked articles as well) support everything I told my pain medicine doctor. However, that didn't stop him from cutting off my narcotics (two hydrocodone 5-325 and one ms-contin per day). I'd been taking this dosage safely for over ten years. I was told that I "don't have a diagnosis...like cancer, or a lumbar puncture" was what he said (which I thought was odd, since lumbar punctures are carried out under moderate anesthesia or local anesthetics). The hydrocodone in the evening cut my occurrences of RLS in half, and helped with my chronic back and arthritis pain.

So I'm going to shovel in the gabapentin, hope for the best, but may cut off my arm (the RLS presents in my left arm and side). Heartless, cruel, and nonsensical, these CDC guidelines...


I live in terror of this, as do many of us, I imagine. So sorry you are going through this.

I am sure you have thought of options...such as a new doctor?
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.

chuas2
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Joined: Wed Aug 06, 2014 7:14 pm

Re: Excellent article on opioids

Postby chuas2 » Tue May 21, 2019 2:31 am

Thank you Ann. It is a sad sort of comfort to know that other people suffer from this, although I sincerely wish that none of us did. My doctor suggested mirapex. I haven't heard off this and will do some research on the boards. It's just frustrating...and maddening, when you've found something that works, and then "sorry, you have crippling arthritis, scoliosis, bulging discs and some ligament tears, and restless legs syndrome but you don't have cancer, so see ya later. Sigh...

badnights
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Re: Excellent article on opioids

Postby badnights » Tue May 21, 2019 6:40 am

My doctor suggested mirapex. I haven't heard off this and will do some research on the boards.
Mirapex/pramipexole is one of the dopamine agonists used to treat Parkinson's and WED/RLS. Most specialists agree now that dopamine agonists such as Mirapex should not be tried in WED/RLS patients unless anti-convulsants (gabapentin, pregabalin/Lyrica, gabapentin encarbil/Horizant) are unsuccessful. The reason for this is that dopamine-type meds cause augmentation - they worsen the disease over time. Symptoms increase in severity, start earlier in the day, and spread to other body parts. It is also agreed by a number of experienced practitioners that the starting and maximum doses of dopamine agonists should be much lower than the FDA approved doses; specifically, Mirapex starting dose should be 0.125 mg and maximum dose should be 0.25 mg. (see extracts below from a paper in a medical journal). So - if you end up on Mirapex, don't take more than 0.125 mg to start, don;t ever go above 0.25 mg.

If the ferritin concentration in your blood is less than 100, you are more likely to augment on dopamine agonist medications. Also, your symptoms are more likely to be severe. So whether or not you take Mirapex, you should get your iron bloodwork done , and ask for the ferritin number (not just whether it's normal or not). If it's below 100 (and your doctor is not concerned about iron overload), then start taking oral iron supplements - one or two pills of ferrous sulfate (each with 65 mg elemental iron) with 500 mg vitamin C on an empty stomach once a day. This should help your symptoms ( I seriously notice mine if I stop taking iron), and will protect you somewhat from augmentation if you take Mirapex.

I am so angry that yet another person has to suffer NEEDLESSLY. I won't go on about it - ten years stable - argh. But there is a bright side, your body will get to recover from whatever ill effects the opioids were causing (they mess with the endocrine system, and probably a lot more). And maybe if you do start back up, you will need less than before.

Gabapentin is erratically absorbed; if you have good insurance, you're prbably better off with Horizant.

As you go thru this process, don't neglect to describe what's happening to your doctor, in terms of how it's impacting your life, with specifics. He should know the results of his decisions (eg. I get 3-4 hours of sleep a night; I wake up two or three times every hour; I went to work but couldn't actually function so three days in a row I had to go home; I can't care for my kids properly; I had to cancel all my appointments; etc whatever is true of your life.)

I would do as Ann suggests, too - start to shop around for another doctor.


From Buchfuhrer, Mark J., Strategies for the Treatment of Restless Legs Syndrome; Neurotherapeutics (2012) 9:776-790
Both of these drugs should be started at their lowest dose
(ropinirole at 0.25 mg and pramipexole at 0.125 mg) and
increased if necessary every 5 to 7 days by their initial dose
until symptoms are controlled. Although the FDA-approved,
maximum doses for ropinirole and pramipexole
are 4 mg and 0.75 mg, respectively, many physicians exceed
this dose, especially when treating daytime symptoms that
may require 1 or 2 additional doses per day. However, after
10 to 15 years of experience with these drugs, concerns
regarding augmentation of RLS symptoms by these drugs
have made many RLS experts rethink the doses used to treat
RLS, and even whether these drugs should be first-line
drugs of choice for this disease. Due to concerns regarding
augmentation of RLS, in the opinion of this author and
several other RLS experts, the maximum doses of dopamine
agonists should be much lower than the approved FDA
doses (such as 0.25 mg for pramipexole and 1 mg for
ropinirole). However, augmentation may occur even at the
lowest doses of dopamine agonists.
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.

chuas2
Posts: 55
Joined: Wed Aug 06, 2014 7:14 pm

Re: Excellent article on opioids

Postby chuas2 » Tue May 21, 2019 6:47 pm

From what I've read, I don't think I want to try the Mirapex. I just sent my gp a request to try running gabapentin encarbil past my ins. co again. They rejected it last time. The most frustrating (aside from the RLS that has me screaming into my pillow at night) is how my doctors don't take this seriously. The pain medicine doc even said "They call it restless LEGS, so you CAN'T have it in your arm!" How can people help you if they don't think there's anything wrong with you? I haven't found a doctor locally, not affiliated with one of two huge pain medicine clinics here. One doesn't take my insurance, and the other...is firing me. And they don't understand that cancer pain isn't the only pain. I wish my pain medicine doc just ONE night with the kind of agony some of us have with RLS! Sorry for the rant. I'm through now...

Rustsmith
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Re: Excellent article on opioids

Postby Rustsmith » Tue May 21, 2019 6:59 pm

chuas, no problem with the rant. We have all been there.

It may be time for you to start thinking about casting your net a bit further to find a doctor. It took me two years to locate a doctor in my town of 100,000 who would prescribe the opioids that I need for my post-augmentation RLS. I had to travel 100 miles to the medical school in my state capital in order to find a doctor who was familiar with RLS and wasn't afraid of opioids. I finally found a local GP who will write opioid prescriptions under the "guidance" of my neurologist. I still have to travel two times a year to see the specialist, but at least this way, I no longer have worry about running out of pills due to interruptions in the mail service or lost letters/packages.
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.

chuas2
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Joined: Wed Aug 06, 2014 7:14 pm

Re: Excellent article on opioids

Postby chuas2 » Tue May 21, 2019 10:52 pm

Sigh...thank you Steve, Ann, Beth. So here's what I have going: sent a request to my gp for horizant, also requested referral to a neurologist, am going to stop taking Valerian (I read some stories from people who said this and melatonin exacerbated their symptoms), am going to do some serious online research regarding doctors outside my immediate area, identified a medical marijuana dispensary near my home, and have a last ditch effort appt with my pain "doctor" to beg for one hydrocodone a day.
If this isn't powerful incentive to buy unsafe overpriced bootleg narcotics in shady neighborhoods from thugs, I don't know what is. This Opiate Epidemic Crisis paranoia (the crisis is real, the paranoia, not so much) is hurting so many people...and what most of us here want? A good night's rest! Why is that too much to ask?

stjohnh
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Re: Excellent article on opioids

Postby stjohnh » Tue May 21, 2019 11:24 pm

chuas2 wrote:Sigh...thank you Steve, Ann, Beth. So here's what I have going: sent a request to my gp for horizant, also requested referral to a neurologist, am going to stop taking Valerian (I read some stories from people who said this and melatonin exacerbated their symptoms), am going to do some serious online research regarding doctors outside my immediate area, identified a medical marijuana dispensary near my home, and have a last ditch effort appt with my pain "doctor" to beg for one hydrocodone a day.
If this isn't powerful incentive to buy unsafe overpriced bootleg narcotics in shady neighborhoods from thugs, I don't know what is. This Opiate Epidemic Crisis paranoia (the crisis is real, the paranoia, not so much) is hurting so many people...and what most of us here want? A good night's rest! Why is that too much to ask?


Chuas2, I was looking through your posts. Perhaps another way to go is small doses of multiple meds: Such as current dose of gabapentin, plus TINY (1/2 of the smallest size tablet) dose of Mirapex (pramipexole) plus kratom. Kratom acts very similar to an opioid and is readily available.

On another note, if you are still in the SF area, Dr. Buchfuhrer, whose main office is in So Cal, is actually also part of Stanford Sleep Medicine, offices in Redwood City. I don't think he comes here very often, but he does come. You might get an appt with him.

I also didn't see any mention of recent ferritin results. RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do (ferritin test) to check for low iron only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub
Last edited by stjohnh on Tue May 21, 2019 11:29 pm, edited 1 time in total.
Blessings,
Holland

Rustsmith
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Re: Excellent article on opioids

Postby Rustsmith » Tue May 21, 2019 11:28 pm

For your last ditch effort with the pain doctor, you might try sharing this article from the Mayo Clinic Proceedings. The authors are most of the best RLS specialists in the US. I would highlight the sentence in the Abstract that says that RLS is not a pain condition. I would also highlight a couple of places in the paper that talk about how only low doses of opioids are required and that tolerance and addiction are not an issues when it comes to treating RLS. This might also emphasize to the doctor that opioids are appropriate treatments when it comes to RLS.

https://www.mayoclinicproceedings.org/article/S0025-6196(17)30825-X/fulltext
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.

chuas2
Posts: 55
Joined: Wed Aug 06, 2014 7:14 pm

Re: Excellent article on opioids

Postby chuas2 » Wed May 22, 2019 4:22 pm

Thank you so much Holland and Steve! I've just started taking iron supplements, even though everything points to this not being very effective. I'm reading the sciencedirect article and may try requesting IV Iron (even tho my doctor pulled on my eye, said "you're not anaemic, iron looks fine). I'm sending the Mayo Clinic report to my gp and will take it to my pain doc, but...

Problem being, I lost my job two years ago and have been rejected for disability, but can't work due to worsening arthritis. So I'm doubtful that my marginal health insurance would cover IV iron treatment (i.e. they previously rejected my doctor's request for horizant, and although I'm a high risk for colon cancer - and over sixty - they've rejected my gp's request for more-frequent-than-recommended colonoscopies). Same problem with potentially seeing Dr. Buchfuhrer...I would have to pay out of pocket, which isn't feasible. My best chance might be seeing a neurologist, if I can last that long.

I've heard of kratom but am scared to try it. For that matter, I've heard of marijuana but am scared to try that too lol! In other words, I'm one of the least likely people on the planet to be a drug addict and/or sell drugs on street corners. Crikey!

stjohnh
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Location: Palo Alto, California

Re: Excellent article on opioids

Postby stjohnh » Wed May 22, 2019 7:14 pm

chuas2 wrote:...

I've heard of kratom but am scared to try it. For that matter, I've heard of marijuana but am scared to try that too lol! In other words, I'm one of the least likely people on the planet to be a drug addict and/or sell drugs on street corners. Crikey!


Both marijuana and kratom are legal in California. (Land of fruits and nuts LOL.)
Blessings,
Holland


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