Prescription Drugs

Meet a Muscular Dystrophy Sufferer Who's Getting Screwed Over by the DEA's War on Pain Pills

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National Pain Report

Colleen Sullivan's body is destroying itself.

At 17, the Marathon, Florida, resident contracted muscular dystrophy, followed by rheumatoid arthritis, scleroderma, and "mixed connective tissue disease." Today, it's not unusual for Sullivan's knuckles to swell "nearly to the size of golf balls," her father, George Sullivan, writes.  

"The tendons in her feet have begun the process of drawing the toes upward. Some days they are so tight that every step brings tears to her eyes. She has great difficulty walking. Her heart and lungs have also developed painful scar tissue."

After years of chemotherapy, corticosteroids, and immunosuppressive drugs, Sullivan now uses Morphine Sulphate and Dilaudid (she also tried OxyContin, but didn't like it) to relieve the pain of swan neck deformity and other symptoms of her illnesses.

Unfortunately, the DEA has made it incredibly difficult for Floridians in pain to get such drugs, and for pharmacies to sell them. The highly regulated process George Sullivan describes in his op-ed for the National Pain Report is downright sadistic:

For years now, Colleen has been required by law to see her doctor every 30 days, so he can write prescriptions for pain relief medicines. She is forced to make a 50-mile round trip and sit in a waiting room full of sneezing and coughing sick people; while her immune system is suppressed by Cellcept, a powerful drug normally used to prevent organ rejection in transplant patients.

In addition, she must take a state required drug test to prove that she takes her medications. She has passed every one.

Then the next step of the ordeal begins. The hunt. The pharmacy crawl. First, we see the pharmacist at the large chain drugstore where Colleen spends an average of a thousand dollars a month on prescriptions. There's no problem there, except for the pain meds.

"We don't have them in stock"… "We're sold out"… "The DEA won't let us fill our orders"… is what we are told.

Then we drive to the next pharmacy and are told the same thing.

"We haven't gotten our orders in a month"… or "Maybe you should see a doctor and pharmacy in Miami."

That would be a 240 mile round trip for us.

Do we sit and wait, as another pharmacist suggests? Or "stop in on Saturday, to see if anything has come in."

By then Colleen will be out of the precious medicine that lets her get up in the morning and sleep at night. The meds that make it possible for her to ride in a car when she sees a doctor, or to occasionally go shopping or to a restaurant.

Without the medicine she depends on, Colleen is stuck in pain.

So tomorrow I'll drive 80 miles up to Key Largo, to see if they have it. The pharmacists won't tell you over the phone. They are scared and I don't blame them. The DEA has set so many rules and traps for them, they trust no one.

Because of the hell his daughter has to go through for pain relief, George Sullivan has started a Facebook group called Patients United for DEA Reform. While I wish him the best, the DEA's approach to fighting prescription pill abuse–even when it involves encouraging law enforcement to circumvent the Fourth Amendment and depriving nursing home residents of pain relief–has near unanimous approval from the White House and Congress. 

H/T Grant T.

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  1. In a world that saw me omnipotent, every DEA official, every lawmaker, every drug warrior would be forced to endure chronic pain until they relented on this. (No, I wouldn’t use my powers to force them outright. It’s not my way.)

    1. Why waste time on those evil people?

      Just put them in the boats; it’s better than they deserve.

      1. “Boats”, (I already know what you mean via article-ref), are too good for them, ALSO make them feed from Carnival Cruise TOILETS!!!

    2. If you think Cynthia`s story is inconceivable,, 2 weeks ago my cousins step dad basically also earned $5190 workin a fourteen hour week in their apartment and their co-worker’s aunt`s neighbour has been doing this for eight months and recieved a check for over $5190 part time from there laptop. follow the information on this link… … http://WWW.DAZ7.COM

      1. SPAM SPAM SPAM GTFA!!! GTFO!!!
        Get Lost you FAKEOUT
        Pseudo-Replier LIAR!!!!!!!!!!!

  2. May every member of the DEA suffer the same pain with no relief for eternity.

    1. DEA employees are part of the ruling elite and therefore would have no trouble getting the meds.

    2. I would gladly volunteer to mete-out their just “reward(s)”!!!

  3. Thank God for government regulations!

  4. It’s sad really and all these programs do is create a black market for pain meds that the DEA was trying to prevent in the first place.

    1. Almost enough to make one question their motives.

    2. Is that what they were trying to do? Or were they trying to guarantee themselves jobs, benefits, pensions and power in perpetuity?

  5. But without the benevolent hand of government regulations we’d all be exploited by Big Pharma and their poison drugs!

  6. One of my best friends as a kid had Muscular Dystrophy. That shit isn’t pleasant. He is of course dead now, died at 26 years old.

    The drug warriors are vile sadists, that’s all there is to it.

    1. “Doin’ right ain’t got no end.”

    2. But if it hadn’t been for the DEA, that kid would have been a drug addict. You wouldn’t want that would you? Living in horrible pain and having no quality of life is just so much better than being an addict.

      I really hate these fuckers. Basically we are making sick people suffer because someone somewhere might enjoy taking pain pills or be a fucking stupid degenerate and kill themselves taking them. That is some vile logic.

      1. My friend had to have parts of his spine fused together so he didn’t fall over in his wheelchair. I remembered when he could still walk; that was back in something like 2nd grade. By 4th grade it was all wheelchair all the time. Muscular Dystrophy sucks is an understatement.

        1. It is horrible. And there are worse things than being an opiate addict. For some people that is the best of a bad set of options. There are people who have really painful conditions that just are not going to get better. But fuck them. They can tough it out and live a clean life.

          1. There’s really very little downside to being dependent on opioids/opiates if it doesn’t dull you out too much and you have a reliable, safe and affordable supply.

            1. People have been heroin addicts for decades. Long term it probably doesn’t do your body a lot of good. It probably reduces your chance of living to a really old age. I would rather live my life not addicted to such. But if the alternative is misery, then I am taking my chances on the opiates.

              The ironic thing is, this society thinks nothing of feeding people huge doses of anti-inflamatories that are absolutely certain with heavy sustained use to destroy your kidneys. But they don’t make anyone high. So that is okay.

              1. It probably reduces your chance of living to a really old age.

                Bill Burroughs and Keith Richards beg to differ.

                1. Richards only did heroin for about seven years. He started in 1969 and quit after he was arrested in Toronto in 1977. For all of his fame as such, Richards really wasn’t a junkie that long.

                  Burroughs is certainly an exception. But some people are indestructible I guess.

              2. It probably reduces your chance of living to a really old age.

                Which isn’t usually an option anyway, for people with conditions causing that much pain.

                1. Exactly wylie. Better to enjoy the time you have.

              3. I agree that it is generally preferable not to be hooked on anything. But opiates, as long as you don’t OD are some of the safest drugs out there for long term use. And for severe pain, there is still really nothing else nearly as effective.

                1. The reasoning seems to be “God wants you to be a pure snowflake and suffering is good for your soul. Better than being a dirty hippy and going to hell.”

                  1. Tehn WHY did Gawd MAKE all of theze “DRUGGY” plants??? /irony/LOL!!!

                    (Eeeer…. Wuz it teh Devil?!?!).

      2. Living in horrible pain and having no quality of life being dead is just so much better than being an addict.

        ftfy

      3. It’s worse, making sick people suffer is the goal, independent of anyone else enjoying pain pills, or killing themselves with them. Drug warriors are utterly depraved.

      4. “Boats” for DEA agents…!!!

        (A “pleasure cruise” for the MOST DESERVING!!!).

        Bon Voyage!!!

  7. On the off chance that Colleen Sullivan reads this:

    Take 200 mg per day of minocycline. The Scleroderma will disappear entirely. The RA will slowly get better. The mixed connective tissue AI condition will slowly get better. I wish I could tell you what to do about the MD.

    It works slow. You may not notice anything for several months to a year. But year to year you will notice a big difference. After 5-8 years the connective tissue disorders should be in remission.

    Possible side effects: hyperpigmentation if you get too much sun.

    Try it, you have nothing to lose.

    1. Literature? Mechanism of action?

      1. The mechanism is unknown. It works, I know from experience. I have RA.

        Shithead rheumatologist told me I was done for in 5 years. Wheelchair then the grave. I got pissed. Read everything I could get my hands on and began suspecting RA was caused by pathogens.

        Then I discovered i wasnt the only one and that some were trying antibiotics, particularly minocycline.

        I tried it and here I am 12 years later splitting firewood, hiking in the woods all day, gardening etc.. I am essentially normal. fuck that doc and her wheelchair.

        1. But RA is an auto-immune disease where the body produces antibodies to another antibody resulting in insoluble complexes that build up in joints or so I was educated.

          Even assuming minocycline was the actual proximate cause of your recuperation, it does not prove a bacterial cause. The minocycline could be working by some mysterious alternative mechanism-and there is no reason to be so sure it would work for Sullivan! Nonetheless, fascinating and uplifting story.

          1. It may not work for her RA. The new doc tells me “when it works it works really well, but for some it doesnt work at all, and when it quits it quits.”

            I am not so confident in the accepted explanation for RA. I suspect mycoplasma hiding in nonvasculated tissue, probably contracted from tick bites. My suspicions were aroused when i found a study of human bones in both north america and europe. RA was present in NA, but not in Europe until whitey started coming over here. Lyme disease has symptoms similar to RA….I started putting two and two together. Once I began looking with that in mind I found tons of studies pointing in that direction.

            It worked for me.

            For scleroderma it works 99%, and that is worse than the RA.

            1. “when it works it works really well, but for some it doesnt work at all, and when it quits it quits.”

              I am going on a limb here, but that sounds consistent with your hypothesis. If some-some-of RA was an auto-immune misresponse to bacterial stimuli, it would be expected to work some of the time but not at all for those who have non-bacterial RA. And the antibiotic could be expected to stop working when the bacterial become resistant, assuming a residual population that has sheltered in a tissue beyond the reach of the antibiotic. Or the body has become really good at processing the antibiotic to nothing but if that were to happen I think it would be a lot faster.

              1. “…the antibiotic could be expected to stop working when the bacterial become resistant..”

                That is what I was thinking.

                After ten years it quit working for me. Now I am on methotrexate, which is working fine. The minocycline gave me ten years extra, no side effects, and saved me tons of joint damage.

                Like I said, she has nothing to lose by trying.

                1. Oh, I left out the part about having to quit drinking because of the methotrexate, dammit.

                  Fortunately I am one of the lucky few who can quit drinking with no problem at all.

            2. Thank you very much for your suggestion, Suthenboy. We will ask Colleen’s rheumatologist if it would be appropriate treatment for her condition.

          2. It’s often assumed that auto-immune diseases, or at least a lot of them, are triggered by infections. Presumably, the microbes display antigens very similar to proteins found in the tissues that get destroyed, or alternatively, that the microbes infect cells which then display the microbial antigens, triggering destruction by T-Cells.
            In the latter case, stopping the infection with antibiotics most likely would end the auto-immune problem (although it might not reverse the damage done; that would depend on what type of tissue was destroyed). But in the former case, the immune system might continue attacking the cells it mistakes for the original infection.

            I haven’t read enough on the subject to know for certain, but my guess is that both of these occur for different auto-immune diseases, so your treatment only works for some people.

            I know that my Addison’s disease began when I had pneumonia. But it certainly didn’t stop when the infection was gone. (A CAT scan indicated that my adrenal glands may’ve been completely destroyed.)
            (It was because of the Addison’s disease and not any antibiotics, but I did get hyperpigmentation. It gradually wore off over the years, but I still tan easily.)

    2. Possible side effects: hyperpigmentation if you get too much sun.

      Considering that a negative side-effect makes you a racist, fyi.

    3. Not true and this shouldn’t be loosely given out online with no credible research. I was on minocycline right before my lupus diagnosis and my rheumatologist said to stop taking it immediately because it can cause problems with your blood work.

  8. Fucking fuckers. Not one legitimate patient should be slightly inconvenienced in the name of stopping some loser from becoming a junky. You don’t force anyone to face horrible pain in order to save some other people from their own mistakes.

    1. Overdosing yourself on street heroin is one thing. There is no way to tell what is in that stuff or how pure it is. But if you OD yourself on pharmaceutical grade pain pills, you either did intentionally as a way to commit suicide or you are just an idiot. You know the dose with those things. Don’t take too many of them. How hard is that?

    2. A couple of years ago I was talking to an psychiatrist who was having trouble prescribing pain meds to a patient whose

      ….dont read this if you are squeamish….

      skull was not connected to her spine. Apparently her foramen magnum was too large and the vertebra were poking at the base of her brain.

      She was in constant excruciating pain. The DEA guys were skeptical that she needed pain meds.

  9. That’s terrible that she has to go through that…I have chronic back pain and for a while my doc would just give me a larger prescription than I needed so I wouldn’t have to come up and see him so often …when Inwas doing better he started lowering my prescription, which was fine until the pain started flareing up again so that I was having to go and see him every month, or rather to see his administrators who would give me a script…sometimes they have mailed It to me and other times when I’ve gotten into a jam they can call in a 5 day emergency prescription …a lot of times patients are too afraid to ask for what they need in fear they will lose access to pain relief…when I lost my insurance and started having to pay for my docs appointments out of pocket? I asked him to double the dose so I wouldn’t have to make the trip so often, or pay for those visits which are like required every six months or so by law in NY, he was fine with that…I know my pharmacists (it’s a chain, but we are friendly)I rarely get the run around but I have before at
    Pharmacies who don’t know me …but after I had the double dose the backup pharmacist was concerned and had to call my doctor to confirm that the dose was
    Correct…it’s all too much and it’s for a drug that’s s much less dangerous than NSAIDS

  10. I have heard from Obamacare supporters that this has changed with that law, because pain med enforcement was supposed to be loosened. Not so, apparently.

  11. But remember: if you’re anti-government, it’s because you’re a selfish old white male racist or something.

  12. Over the mountain and through the woods!

    http://www.GotDatAnon.tk

  13. DEA = Dead End Atrocities

    I only wish their agency and agents the said-same
    pain and suffering they have perpetuated upon others!!!

  14. A heartfelt thanks to Mike Riggs, and all those who have posted the supportive comments that I have read here. We invite you to read the volumes of information that we have researched and posted on the Patients United for DEA Reform Facebook page.

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