Black Box Warnings- Take Heed- Humira etc

August 12, 2013 at 6:57 pm 6 comments

selfportrait- Chris Ritchey

selfportrait- Chris Ritchey

PART ONE https://thatwoman.wordpress.com/2013/08/07/the-faces-of-the-black-box-warning-humira/

A lot of us , at least one in three, have had to deal with someone in our immediate family having cancer- it is an obscenity! We have watched as loved ones have been hooked up to innocuous looking IV’s – bland liquid – belaying the fact they are full of poisons . The tip-off to their danger could be the way the nurses etc dress when they administer the noxious cocktail.

chemo_safety

17% of cancer nurses unintentionally exposed to chemotherapy, U-M study finds
Researchers stress importance of implementing nurse safety measures around these highly toxic drugs

Unintentional chemotherapy exposure can affect the nervous system, impair the reproductive system and bring an increased risk of developing blood cancers in the future, the researchers said. These exposures are as dangerous to a nurse’s health as being accidentally stuck with a needle, the researchers said.

http://www.uofmhealth.org/news/cancer-chemo-0822
csp

I still can see my son hooked up to the IV’s pumping poison into his body- Why would anyone knowingly put their child in such a terrible place? To save his life and that is why millions of people all over this world subject themselves to the poisons of a hopeful cure. It is a trade-off because although the poisons kill the good cells they hopefully kill the cancer. It is a trade-off cure or be killed. You make that decision.

However with drugs that tout ” possible remission” – such as Humira – they are being touted for non – life threatening conditions-

Humira (adalimumab) is a TNF inhibitor approved for the treatment of rheumatoid arthritis, chronic plaque psoriasis, Crohn’s disease, ankylosing spondylitis, psoriatic arthritis, and polyarticular juvenile idiopathic arthritis. Humira is used for pain relief and to reduce inflammation in a number of autoimmune diseases.

black box

http://www.ehealthme.com/ds/humira/death

On Jul, 16, 2013: 130,505 people reported to have side effects when taking Humira. Among them, 1,024 people (0.78%) have Death.

The reason for the last two posts came to this blog in the form of a comment Wendy was looking for help and information :

I have been on Humira for 18 months now and have now decided to stop injecting it. Four months ago I was diagnosed with multiple pulmonary Embolism in both lungs. I was cycling 150km a week and very fit. I am still in extreme pain though my clots have dissolved from Warfarin therapy. No one can tell why I am in so much pain and also will not suggest that it may be the Humira. It seems that this wonder drug has caused a life threatening condition for me with no answers from anyone. So, I will discontinue treatment and see if I improve. I only hope that I have not developed long-term damage to my body that can not be reversed.

selling drugs

I contacted Lisa and others who have suffered untold pain with the deaths of their loved ones – and the “ MINIMALIZATION MANTRA” of those in the “healing business” and asked for their help in answering Wendy – From a mum who also lost her son to the Minimalization Mantra

If you decide to take Humira, or any other similar immune suppressant drug, make sure you have monthly blood work done. If there is any abnormal result, ask to be tested specifically for hstcl. It takes a specific test to identify it.

hepatosplenic t-cell lymphoma mostly/usually results in death (vs often). It is very rare to survive it.

Yes, the Humira ads/pamphlets make the side effects sound like no big deal – easy to take care of. Sickening. Rob didn’t take Humira, but was on Imuran/Azathioprine, another immune suppressor. We were told it was the thing to take, no big deal, no checking blood counts regularly. And no one tested for hstcl until he was critical – even though I told every doctor we saw that he was on Imuran for uc(ulcerative colitis). Even his GI didn’t get it. “It is so rare.” Only because there is no required reporting… so how would they know.

Maxx Wendell ALSO a face of Humira

Maxx Wendell ALSO a face of Humira

As the mother of Maxx Wendell, the boy whose story about Humira appears on Loraine’s blog,
https://thatwoman.wordpress.com/2012/04/24/the-good-dr-drugs-trust-selling-of-hope-part-3/

I’d like to offer a few thoughts on the very complex nature of the patient’s experience of what it means to suffer the consequences of medical and/or pharmaceutical negligence.

There is a tendency to simplify the myriad interconnected factors that come into play when one is ill and prescribed a medication that offers either cure or, as significant, hope for one. We believe that if we do what we are advised by the professionals–our doctors– to do, if we follow the rules, we will reap the eventual reward– a return to health and well being. If we do not….then we are responsible for what may occur as a result of a failure to comply.

Essentially, as patients we are almost goaded (and what choice, really do we have to do otherwise?) into placing our trust, our lives, into the hands of those who, according to those rules, are equipped to know what is best for us. When everything works, we consider ourselves to have done “the right thing.” We are grateful to our doctors, we pride ourselves on our intelligence to have located the best practitioner-“expert”, we are gratified in ways that only the once ill, now recovered can be.

But, just as often, everything doesn’t work. Just as often, everything not only fails to work, but breaks apart slowly, horrifically, unimaginably into irretrievable bits no matter our commitment or compliance. No matter the “evidence-based science.”

It is never simple to be ill, to be diagnosed with a disease or condition that requires immediate attention and/or a protocol for managing a long-term chronic situation, but because we live in a time when science and technology are packaged (to the tune of billions of profit dollars) to offer the promise of a long-lived, disease-free life we cannot help but trust in the illusion that this is always possible. And for some it is.

Image: Juliette Borda

Image: Juliette Borda

For millions of others, however, it is not. And when it becomes clear that “science” can’t save or help us, as patients we become failures. On every level. Regardless of what we did, or how hard we fought, how many questions we asked, how intelligent we believed we and/or are doctors were, we failed. We are sick, we will stay sick, and many of us will die. When that happens, we cannot help but look for people, situations, circumstances to blame.

Frequently, there are no identifiable causes. But just as frequently there are–and particularly so whenever drugs are involved. Maxx died from Hepatosplenic T-Cell Lymphoma only because of the drugs he took, only because, despite available scientific knowledge and evidence known as early as 2002, the pharmaceutical companies in concert with a profit-compromised, inefficient FDA did not make the information we needed to keep him from ever becoming ill in the first place available in time to do so. Maxx died in 2007.

Of the three drugs he took for years in the manner they were prescribed and about which deadly side-effects were known, but discounted as “statistically insignificant,” one did not receive a Black Box warning until 2008 another in 2012, and one other not at all.

Millions of people take drugs that will either help, or possibly kill them. Millions of people have died from medications that have turned out to be potentially deadly and about which this was known. It happens every day.

Ultimately, this reality, however disturbing, however tragic, means little in terms of helping those who are suffering or dying to answer the questions, “What now?”

When we are sick, we will go to a doctor and we will be told to do something, take something, have a procedure. We will have to make a choice but we must understand that our choices will not, cannot, ever really be based upon full disclosure because there is no such thing. Whether intentionally or not, we can never know everything there is to know about what we most need to understand–how or IF it is possible to recapture and maintain our health, or if our choice to comply may indeed have deadly implications. We cannot know because we ARE NOT TOLD.
death_humira

What happened to Maxx is not just about Humira, or any of the drugs he was prescribed, although many, if not most, are reading this site searching for information about this particular drug. What befell my son is a tragedy, but his is not a new story.

It is the same story that involves the same decision-making process and similar risks, for millions of others who must take medication. The Gordion Knot is this: No matter how hard we may look for answers we can never be advised fully of any risk in all its possible permutations. And it is this that we must understand in the very beginning; this that must also be a crucial component of the decision-making process—that the possibility for utter annihilation lurks within every choice that as patients we may make.

We must simply assume on the face of it that we only see the tip of the iceberg–that below the surface there is much more that may prove catastrophic. And most importantly, we, as patients, are not to blame, we are not at fault. We do the best we can given the fact that we are all only ever provided with the favorable, positive information the drug companies are eager to release.

Had we known that these drugs harbored even a 00000000000000.1% chance that patients in a population of young men between the ages of 16 and 32 could develop a terminal cancer as a “side effect,” he would not have taken the drug. We did not know this and we DID ask again and again for years. “What are the risks? What are the most serious side effects? How long does he have to take these drugs?”

Doctor_Male__HoldingMedication_ss-SMALL

And the answers were always the same–

any risk for incurring dangerous (not to mention, deadly) side-effects are miniscule and the benefit of the medication outweighed any dangers.

What few studies that did exist about the deadly implications of recombinant immuno-suppressive drug therapy in young adolescent males with ulcerative colitis WERE NOT RELEASED either to doctors or the general public. Should we have assumed that what we did not know, even in our wildest imaginings was just as likely to destroy our lives, to kill him, as not? At what point does the term “patient input” become an absurd joke?

This is the bottom line, what patients MUST understand before they take any medication: Whatever the condition, whatever the drug, whatever the situation, you can be certain that some professional somewhere, a so-called an expert, a drug company’s scientific research team, has or is deliberately suppressing life-saving information and someone, somewhere in a pharmaceutical marketing department is working hard to package and present only partial truths, pieces of a clinical reality, that may or may not have disastrous consequences for yourself or those you love most in the world.

The worst CAN and does happen all the time. Critical information on the Internet about these drugs was not available in 2002, but access to this kind of knowledge IS available now.
Be very, very careful.

Paula

As another commenter stated- my dear friend- Paula who herself has been hooked up to the Kill or Cure IV

I found it interesting watching the ads on TV for all the meds. It’s called push/pull. Push it on the consumer, pull them into their doctors asking for it. Notice when they’re saying the fine print they have happy people having fun, living their lives and you don’t hear the warning, because that’s what you want.

Follow the money.

Paula”s story found here :
https://thatwoman.wordpress.com/2013/03/27/you-have-cancer-paulas-journey-shared/

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Entry filed under: a Cow -elle opinion, Blogging, Chris Ritchey, Corporate responsibility, Doctor/Physician, grief, health, hell is other people, media, medical, notorious opponents of exactitude. Tags: , , , , , , , , , , , , , , , .

The Faces of the Black Box Warning- Humira Gabriel Miller- love endures- August 17th

6 Comments Add your own

  • 1. Dave  |  August 12, 2013 at 8:20 pm

    Truly frightening. Thanks for sharing these stories.

  • 2. RichRobbin  |  August 12, 2013 at 9:05 pm

    Thank you f or your continued education !

  • […] Since that time the “questioning me“ questions intent and the worthiness of some in the supposed healing profession. https://thatwoman.wordpress.com/2013/08/12/black-box-warnings-take-heed-humira-etc/ […]

  • 5. Pam  |  April 17, 2015 at 2:57 pm

    My husband, aged 58, was badgered by his RA Doctor to get on Humira. We held her off for 3 years or more but he finally broke down and decided to try it. After 2 injections he was feeling tired and just not good. He had no other health issues, no blood pressure problems. He died yesterday after suffering a massive hemorrhagic stroke. DO NOT TAKE HUMIRA!!!!!!!!!!!!!!!!!!! The ICU doctors keep telling me that he did have blood pressure problems he just didn’t have them checked so we didn’t know, I kept telling them he did get check ups, no problems. Then I told them he had taken Humira, they didn’t say another word about it. When I cancel his appointment with his RA doc, I plan to let her know that I know it was the Humira that killed him. Not much good for me and my family but maybe if someone else reads this they will realize that their patient is not exempt from this.

  • 6. thatwoman  |  April 17, 2015 at 3:07 pm

    Oh Pam I am so sorry – this is dreadful – I wish I had words of comfort – my thoughts are with you and yours. Feel free to contact me if there is anything I can help you with Loraine lorritch7@gmail.com

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