"I Am Not An Animal, I Am A Human Being!" - Joseph Merrick Did Not Have A Choice But I Do. What Choice Do I Make?

Joseph Carey Merrick (1862-1890)

Joseph Carey Merrick, often mistakenly referred to as John Merrick and known in the popular culture as the Elephant Man (5 August 1862 – 11 April 1890) was an English sideshow performer and celebrity The cause of his deformities is still unknown. Elephantiasis, neurofibromatosis type I and Proteus syndrome have all been suggested. In an autobiographical note, Merrick mentioned that his deformity began developing at the age of three with small bumps appearing on the left side of his body. Because of his condition, Merrick was unemployable (in the regular sense) for most of his life. In 1884, he took a job as a sideshow performer in a freakshow, where he was treated decently and earned a considerable sum of money. 

Extremity of Merrick's Skin & Bone Deformity

Later, Merrick came into the care of the physician Frederick Treves, who arranged for him to be housed at the London Hospital. Merrick became something of a celebrity in Victorian high society. Alexandra, then Princess of Wales and later Queen Consort, demonstrated a kindly interest. He eventually became a favorite of Queen Victoria. He was unable to sleep lying down due to the weight of his head, but may have tried to do so in an attempt to imitate normal behavior, leading to his death by suffocation. He was portrayed on stage by David Bowie and on film by John Hurt in a movie directed by David Lynch. 

You cannot imagine how I am fighting to get through this blog. My back and thighs, and wrists are all screaming with an itchiness that responds to nothing beyond a momentary relief. An by momentary I truly mean under a minute or two. I really want to finish this blog well because I care about Joseph Merrick and do not make any comparisons halfheartedly. In middle school, I saw David Bowie play the Elephant Man on Broadway in the brilliant play by Bernard Pomerance, and I identified so much with the sufferings of the main character because of my own struggles with stuttering. 

On stage, the lead actor has no make-up or special effects, simply creating the illusion of the deformity through posture, voice and movement. Such a rare and special aesthetic and spiritual experience for a young boy because it both consoled my soul while bringing me into a world long past that seemed realer than my own. I understood the passion in Merrick;s voice when he realizes and finally accepts the boon of his rescue by Fredick Treves: "Never had a home before... I have a home. This is my home."

David Bowie Playing the Elephant Man on Broadway

What happened next is a bit shameful in a silly way, but also the heart of one of the most creatively affirming moments of my youth. For years, I told people that I played the lead part of Joseph Merrick in the play in my high school. This is was a confabulation. In truth, my high school never put on a production of the play. I did play the role, however, in my acting class, in a scene where Joseph Merrick first meets Madge Kendall, the society lady and famous actress that takes him under her wing. I was a sophomore and Mrs. Kendall was played by a beautiful and smart junior named Steuart Osha. All of my memories of the experience are positive, and I believed it was my best acting performance ever in a medium-sized list of many mediocre showings. In that moment, my stuttering made me an outcast like Merrick's deformities. 

But today I am closer to Merrick than I have ever been before as the rash rages like a blitzkrieg across my body, covering my back and hands in the past few days while making initial forays onto my neck and across my chest. It is maddening and, unlike Joseph Merrick, I have a choice, I can stop taking this fucking medication and focus on the steroids that I need to put a stop to this advancement and start healing. Since the oral steroids are contra-indicated in the medical trials, I cannot take them while remaining in the program. But I have done it for over two and a half months, day after day of excruciating and endlessly banal suffering and itching and never more than 30 to 45 minutes of relief. I am on so many drugs and it take a train full of prescription sleeping meds like Lunesta and Trazadone to kncok me out so I can sleep. The next day, I am wiped out and suffering again. 

I don't know if I can keep doing this. I really want to end right now. But I don't want to be a quitter but the insanity and the screaming and the body under siege is beyond belief. Why does my leg have to look like it does below? Why should I risk letting it spread to my face and possibly even genitals? It's already all over my ass so I can barely sit down anywhere. Please let me know why I should continue if better drugs are coming soon? 

Right now both my left leg and my right hand are screaming and I have to dunk them in freezing cold water to make it stop!

My skin's like sandpaper. Why? 

The red bumps hurt? Why? 

The itching never stops. Why?

Why the hell am I continuing to do this to myself? 

It really seems like enough is enough!

Thanksgiving - Grateful For The Gift Of Writing - Three Recent Poems - shedding ashes, the secrets of each muse & never mine alone

As I itch on my bed, I have been writing and rewriting three recent poems that I wrote, revised or took to the next level of expression in the past month. This is my Thanksgiving gift with nothing bad about nothing and the true gratitude for my creative talents and the gift of this rare human birth. So here we go, and thank you for taking the time to read and comment if you are so moved or please ask me any questions that you might have. In any case, please enjoy... John

Three Poems by John Lavitt (November 24, 2011)

shedding ashes

she looks like a hot woman drinking,

she becomes a little girl weeping,

so young, still the shadows of a child,

lurching through vertigo, shedding ashes.

if you gaze gently into her eyes,

if you listen softly as she speaks,

a sudden smile, sweet and surprised,

emerges. there is a flower veiled,

beyond the shards of animal memory,

no exit possible, the fondle lurking,

cries muffled, her home a wicked altar,

so much innocence sacrificed so soon.

enough diagnosis to make you feel better;

didn’t you once boast of life preservers?

but what can i do? this is just in passing.

what medicine of earth and sky?

how many need a vision possible,

not visionary, no light show from heaven,

but a modest map of a future rendered

where each step taken leads.

if she beholds a path leading,

a vision of a woman possible,

her shattering less than a shadow,

a witness to the morning sun.

the secrets of each muse

who could paint such angry beauty?

not quite angry and definitely not bitter,

but exacting, dramatic and classical;

this woman sings of Europe before the fall.

Modigliani releases the flow of such softness,

his brush baring the aristocracy of beauty,

long and languorous, a sexual calm in color,

but blunting the elemental edges of this woman.

a strange mixture expressed in dichotomy;

a mix of a sunset stroll in the Mediterranean

with cigarette smoke rising in Bohemian shadows.

she cannot be captured without the chains.

the painter required, of course, Egon Schiele;

each stark line reveals her sexuality radiant,

battling against death, against cages respectable.

her truth exposed, the lovely flaws of a girl lost.

such beauty caught can never truly convey

three dimensions, the dark corners and closed drawers,

all she fears and all she loves: there are certain dreams,

the secrets of each muse the artist can never betray.

never mine alone

in the bright ambition of the waking hour,

there awakes a certain inclination, a need

to capture the world with the art of words.

this is immortality, my name carved in stone,

or just one more simulation of the snickering past;

so many have walked these cornerstones before,

each writer dancing in the whirl of unique discovery.

i believed in my significance. this is my comfort zone.

yes, i have written revolutionary poems before,

when i was younger, when i was young,

everything appeared to be the very first:

i was raising the curtain of the world!

repeated postures, the steps of an antiquated dance

where each poem sings of next year’s revolution.

but if i have never in truth been the original voice,

what is the point of scratching out these copies?

beyond today's survival, the breath of expression is sacred.

yes, this primal path not cut by the soles of my feet.

other footsteps trodden, fossilized imprints of the greats,

but each new step taken is a wondrous mystery.

the critics braying; thousands of greater poets past,

the bold first step long forgotten in ash and dust.

no, my friends, this graven path was never mine alone.

countless steps taken before, countless to come.

Unbelievable: Hepatitis C deaths Outpace HIV Since 2007. A Proven Fact! This Is No Joke!

This is beyond words! This is just too much! This is how serious is the Hepatitis C infection. It is no joke, and there is a reason why I am willing to put up with the side effects and hell on earth! Somehow and someway, John Lavitt will survive!

Deadly And Lurking Inside So Many Dangerously Unaware Americans 

TWO ARTICLES BELOW:

Article by Liz Highleyman for the Bay City Reporter

Deaths related to hepatitis C have outpaced those due to HIV/AIDS since 2007, researchers reported at the American Association for the Study of Liver Diseases meeting earlier this month in San Francisco.

People coinfected with both hepatitis C virus and HIV experience faster liver disease progression and do not respond as well to standard interferon treatment. The Positive Health Program at San Francisco General Hospital has pioneered a successful model of treatment for coinfected people, and two recent studies showed that new hepatitis C drugs can improve treatment outcomes for this group.

Hepatitis and HIV deaths

Researchers with the Centers for Disease Control and Prevention looked at more than 21 million death certificates recorded between 1999 and 2007 to compare rates of mortality due to HIV and hepatitis B and C. More than 1 million Americans have chronic hepatitis B and at least 4 million have hepatitis C.

Over years or decades both forms of hepatitis can progress to life-threatening liver disease including cirrhosis and liver cancer. San Francisco has one of the highest rates of liver cancer in the U.S., largely due to the high prevalence of hepatitis B among Asians. New hepatitis B infections have fallen dramatically thanks to widespread vaccination, but there is no effective vaccine for hepatitis C.

CDC's Dr. Scott Holmberg reported that the hepatitis B death rate remained roughly stable during the study period, at around 1,800 cases. Nationwide deaths due to HIV fell during that period – to about 12,700 – after the debut of effective combination antiretroviral therapy in the mid-1990s.

But deaths due to hepatitis C increased during the same period, reaching more than 15,000 in 2007. Almost 75 percent of hepatitis C deaths were among baby boomers in the 45-64 age group, many of whom were infected years ago and remain unaware of their status. Experts think more than half of people with hepatitis C have not been diagnosed.

"Without reducing allocation of resources that have diminished HIV deaths, we think a commitment to detect and treat chronic HCV will markedly improve the growing wave of disability and death from this under-appreciated viral infection," Holmberg concluded.

Coinciding with the AASLD meeting, Silicon Valley Congressman Mike Honda, Representative Bill Cassidy (R-Louisiana), and Senator John Kerry (D-Massachusetts) introduced new legislation – the Viral Hepatitis Testing Act of 2011 – to expand funding for hepatitis B and C education, prevention, testing, and treatment.

"Passing the Viral Hepatitis Testing Act of 2011 will save lives and improve health care," Honda and Kerry wrote in a recent op-ed for the congressional newspaper the Hill. "The costs of education, research, and treatment pale in comparison to the health costs that will be incurred if we do nothing."

HIV/HCV coinfection

The CDC study found that people with HIV and hepatitis had a higher rate of death than those with hepatitis alone – about twice as high for hepatitis B and four times as high for hepatitis C. Experts estimate that approximately one third of HIV-positive people in the U.S. also have hepatitis C, a rate reflected among HIV patients at SFGH.

The Positive Health Program – a partnership between SFGH, UCSF, and the San Francisco Department of Public Health – treats about 800 HIV-positive people with hepatitis B or C.

During the past decade, epidemics of presumably sexually transmitted acute hepatitis C among HIV-positive gay and bisexual men have been reported in Europe, Australia, and the U.S. While unprotected anal intercourse, fisting, and use of drugs during sex have been implicated, the exact risk factors are not fully understood. According to PHP medical director Dr. Brad Hare, the majority of HIV/HCV-coinfected people at SFGH were likely infected via sex.

PHP's coinfected patients are treated at a primary care clinic with an integrated medical team, rather than being referred to a specialty liver disease clinic. The interdisciplinary team includes physicians, nurses, social workers, pharmacists, and psychiatrists. The program features a Tuesday afternoon HIV/hepatitis coinfection clinic and a weekly hepatitis C support group.

Vertex Pharmaceuticals announced this month that it has awarded 16 grants – totaling approximately $1.5 million – to innovative hepatitis C care and support programs, including PHP and the Organization to Achieve Solutions in Substance Abuse clinic in Oakland.

New hepatitis C drugs

As previously reported, two new hepatitis C drugs were approved by the Food and Drug Administration in May. Boceprevir (Victrelis), from Merck, and telaprevir (Incivek) from Vertex, are both HCV protease inhibitors. Unlike interferon, which stimulates the body's immune response, these direct-acting antiviral agents target the viral lifecycle.

Following their approval, Hare told the Bay Area Reporter that the new drugs are "groundbreaking," and predicted that "in the next few years many more hepatitis C drugs will become available."

Boceprevir and telaprevir were initially approved for HIV-negative adults with hard-to-treat genotype 1 hepatitis C, to be used in combination with injected pegylated interferon plus ribavirin. In clinical trials, adding either drug increased the likelihood of a cure and allowed many people to be successfully treated with shorter therapy.

Boceprevir and telaprevir are not yet approved for people with HIV, but recent study findings show they will likely also benefit.

At the AASLD meeting researchers presented interim results from a study of telaprevir plus pegyalted interferon/ribavirin in 60 HIV/HCV-coinfected patients. This analysis included some people who did not yet need HIV treatment, some who were taking efavirenz/tenofovir/emtricitabine (the drugs in Atripla), and some who were taking boosted atazanavir.

Overall, 71 percent of people taking telaprevir triple therapy had undetectable HCV viral load at 24 weeks compared with 55 percent of those taking pegyalted interferon/ribavirin alone. People not on ART did slightly better than those who used efavirenz, who in turn did somewhat better than those on atazanavir.

Side effects were more common in the telaprevir group than in the standard therapy group, but coinfected people in this trial did not have worse side effects than HIV-negative people in previous studies.

Another study, reported at the Infectious Diseases Society of America meeting last month in Boston, compared boceprevir plus pegyalted interferon/ribavirin versus standard therapy in 100 HIV/HCV-coinfected patients taking boosted protease inhibitor regimens for HIV.

Mark Sulkowski from Johns Hopkins University reported that after 24 weeks, 71 percent of participants taking boceprevir triple therapy had undetectable HCV compared with 34 percent of those using pegylated interferon/ribavirin alone. Again, people taking boceprevir experienced more side effects, but these did not differ from side effects seen in HIV-negative people.

Both studies are ongoing. Treatment will continue for 48 weeks, and participants will be followed for an additional six months to see if HCV remains undetectable, which is considered a cure.

In an effort to avoid its notorious side effects, researchers are testing several interferon-free regimens. The AASLD meeting featured numerous presentations showing promising outcomes for novel direct-acting HCV drugs both in combination with interferon and in all-oral regimens. Most trials to date have looked at HIV-negative people, but companies are now starting or planning studies for HIV/HCV-coinfected people as well.

What The Hep C Virus Really Looks Like!

November 10, 2011

Hepatitis C Surpasses HIV as Cause of Death in U.S.

BY: CHRISTOPHER DONALDSON  11.15.2011

It’s official. Chronic hepatitis C virus (HCV) infection is associated with more deaths than HIV infection, according to sobering new data presented by the U.S. Centers for Disease Control and Prevention (CDC) on Tuesday, November 8, at the 62nd annual meeting of the American Association for the Studies of Liver Diseases (AASLD) in San Francisco.

The discouraging findings, presented by Scott Holmberg, MD, MPH, chief of the CDC’s Division of Viral Hepatitis Epidemiology and Surveillance Branch, come from data involving 21.8 million deaths reported to the National Center for Health Statistics between 1999 and 2007. The only cases included in the analysis involved reports that specified HIV, AIDS, HCV or hepatitis B virus (HBV) infection as possible contributors to the deaths.

Encouragingly, death rates associated with chronic HBV infection—a major cause of liver failure and liver cancer—remained relatively flat between 1999 and 2007. In 2007, for example, about 1,800 U.S. residents died of HBV-related complications, which translated into less than one chronic hepatitis B-attributable death per 100,000 people in this country.

Death rates related to HIV infection continue to fall. Whereas HIV contributed to 6 per 100,000 deaths in 1999, the rate dropped to less than four per 100,000 deaths in 2007.

Hepatitis C–related deaths have increased sharply, Holmberg’s team reported. Whereas HCV contributed to roughly 3 per 100,000 deaths in 1999, the HCV-related death rate exceeded 4 per 100,000 people in the United States by 2007.

With respect to crude numbers, roughly 12,700 HIV-related deaths were reported to the National Center for Health Statistics in 2007. More than 15,000 HCV-related deaths were reported to the center that year. 

Most viral hepatitis deaths occurred in people in the prime of their lives. About 59 percent of people who died of complications related to hepatitis B were between the ages of 45 and 64. The impact of chronic hepatitis C was even more substantial—roughly 73 percent of the deaths related to HCV were in baby boomers.

Not surprisingly, death rates were highest among certain populations. For example, people coinfected with both HBV and HCV faced a 30-fold increase in the risk of death from liver disease or related complications. Alcohol abuse was associated with a four-fold increase in the risk of death. Coinfection with HIV nearly doubled the risk of death from HBV-related complications and quadrupled the risk of death from HCV-associated liver disease.

“[Achieving] declines in mortality similar to those seen with HIV,” Holmberg’s group concluded, “will require new policy directions and commitment to detect and link infectious persons to care and successful treatment.”

German Pharmaceutical Giant Boehringer Ingelheim Is All About Money And Fast-Tracking New Drugs!

Wow! Check out those expensive new headquarters of German Pharmaceutical Giant Boehringer Ingelheim Pharma! They are all about marketing for the money and getting those drugs approved!

Boehringer Ingelheim’s lead hepatitis C compound moves into phase III – the first within the BI HCV portfolio

(Yes, BI Has A Portfolio of Hep C Drugs To Cash In On!)

FDA Fast Track designations granted for both: the protease inhibitor BI 201335 plus standard-of-care and the interferon-free combination of BI 201335 with polymerase inhibitor, BI 207127

Not for U.S. media
INGELHEIM, Germany, 2 April 2011 – Boehringer Ingelheim today announced the study outline for the pivotal Phase III clinical trials designed to evaluate BI 201335, its once-daily oral protease inhibitor, in both treatment-naïve and -experienced patients with chronic genotype-1 hepatitis C virus (HCV), the most challenging genotype to treat.

In parallel, the U.S. Food and Drug Administration (FDA) has granted Fast Track designations for BI 201335 plus standard-of care (SOC), and as part of the interferon-free combination with the polymerase inhibitor, BI 207127, in chronic genotype-1 HCV patients.

"We are delighted to receive the FDA’s Fast Track designation for both, our BI 201335 plus SOC, and interferon-free combination treatment approaches. If successful, the combination therapy carries the potential for patients to live without the burden of interferon’s side effects," said Professor Klaus Dugi, Corporate Senior Vice President Medicine at Boehringer Ingelheim. 

BI 201335 Phase III Trials* BI 201335 will be evaluated in multiple randomised, double-blind, placebo-controlled trials in combination with pegylated-interferon and ribavirin (PegIFN/RBV), the current HCV SOC. The Phase III trials include two studies in treatment- naïve and one study in treatment-experienced chronic genotype-1 HCV patients. The two studies in treatment-naïve patients will be conducted in the European Union and Japan, as well as the U.S., Canada, Taiwan and Korea. The study in treatment-experienced patients will be conducted globally. BI 201335 will be dosed once-daily at either 120mg or 240mg in combination with PegIFN/RBV and treatment durations will range from 24 to 48 weeks. The primary endpoint of each trial is sustained viral response (SVR), which is considered viral cure. 

PegIFN-Free Phase II Trials of BI 201335 + BI 207127 In parallel, Boehringer Ingelheim is developing BI 207127, an oral HCV polymerase inhibitor that has completed Phase I clinical trials in combination with BI 201335. Phase II trials evaluating BI 207127 plus BI 201335 in PegIFN-free regimens, both with and without ribavirin, are currently underway. The FDA has designated this investigation as a Fast Track development programme. Fast Track is a process designed to facilitate the development and expedite the review of drugs to treat serious diseases and fill an unmet medical need. The purpose is to get important new drugs to patients earlier.(Nobody Ever Told Me About The Interferon Free Trials Of BI 207127: Why Is That? Why Didn't I Have The Option Offered?)

About Boehringer Ingelheim in Virology Boehringer Ingelheim has more than 6,900 scientists working in cross disciplinary teams within our global R&D network in six large therapeutic areas, including virology. In addition to its ongoing research programme for HCV, Boehringer Ingelheim has a long-standing history in virology drug development, including compounds for the treatment of HIV (VIRAMUNE® (nevirapine) tablets/oral suspension, the first approved HIV non-nucleoside reverse transcriptase inhibitor (NNRTI) and Aptivus®, an HIV protease inhibitor). 

The Evolution of a Company Logo Expressing What Exactly?

Boehringer Ingelheim Pharma And Marketing Strategies To Make Money

Pressure in consumer healthcare sales

Healthcare reforms and a downward pressure on prices as a result of generic drug manufacturers leave companies like Boehringer Ingelheim under enormous pressure to reduce costs. The competition is tough and the customers are experts: Companies that want to sell medicines to pharmacies require strong and original sales strategies. The consumer healthcare products division of Boehringer Ingelheim Pharma GmbH & Co. KG enhanced its SAP Customer Relationship Management (SAP CRM) application with additional campaign and event management applications to gain an overview of all of its marketing activities and measure their success.

Boehringer Ingelheim is one of the world’s top 20 largest pharmaceutical companies. It employs 39,800 people in 135 associated companies worldwide. The family-owned company, which was founded in 1885, focuses on researching, developing, producing and selling new compounds for both human and veterinary medicine. In 2007, it generated total revenues of €10.95 billion. The firm invests almost one-fifth of its revenues in the research and development of new medicines.

The pharmaceutical company’s consumer healthcare products division intends to launch a marketing campaign for the pharmacy-only medicine in the next quarter that will continue for several months.

Boehringer Ingelheim groups pharmacies together according to sales, potential, and segments. 

To measure a campaign’s success, all internal and external customer data is consolidated and compared. The 150 members of the sales team now have access to a graphical and easy to use SAP CRM user interface that offers a standardized view of all the campaigns and events. The days of sending Microsoft Excel and Word documents back and forth to prepare for a marketing campaign are definitively over.

It does not take long for the sales representative to reach a deal with the pharmacists: The pharmacy will place the medicine in a prominent position behind the cash register over the coming summer months, while a product stand and additional display materials in the shop’s window will help draw attention to the sales promotion. 

A year earlier, the sales representative would have organized his marketing activities and visits to pharmacies almost entirely at his discretion. He would have worked alone to classify customers and assess their potential. Previously, he and his approximately 60 colleagues were only informed about upcoming marketing activities during sales conferences.

Today, however, the sales representative plans his activities together with the company’s marketing department, supported by an industry-specific solution with special campaign and event management functions. All the customer data is prepared in the centralized solution to give the sales team timely information about campaigns and a structured analysis of their success.

Boehringer Ingelheim wanted to use a standardized campaign and event management system to improve communication between the marketing department, office-based personnel, and external sales representatives. The new solution provides decision-making support to sales management, marketing, and sales representatives to increase sales. One of the objectives of the system was to use standardized data and comprehensive analysis to determine which wholesalers or pharmacies were targeted by campaigns currently underway. 

Employees enter campaigns, activities, promotions, events, information about where they will be held, and additional data about trade shows or flight departure times, for example, in the marketing and event calendar. Furthermore, an entry can be linked to a campaign as soon as it is made in the system. Analysis and reporting functions enable Boehringer Ingelheim to track the success of the go-to-market of a new drug, for example. “The quality of our customer overview has improved significantly,” says Geßner.

The new marketing, event, and campaign management system has fulfilled project managers’ and users’ expectations, and the feedback has been overwhelmingly positive. Boehringer Ingelheim employees are very satisfied with the integrated system enhanced by means of the CRM-To-Go package for the pharmaceuticals industry.

Not Very Helpful: Medical Sites On BI 201335 And Bad Rashes, But Good Ideas From Real Patients Suffering Like Me!

Basically, all I have learned is that they have no answer to the severity of my particular rash, and such severity has caused 4% of patients to discontinue treatment. Not very helpful. Man, this is really wearing me to the bone! Thank God for fellow patients in other Protease Inhibitors treatment with bad rashes. Maybe something they suggested below might just work.

Here is the list: Prednisone, Zertec, Elocon steroid cream, Atarax, Triamcinolone Acetonide Cream, Solumedrol

You Would Think There Would Be An Answer Readily Available!

Here are some possible treatments recommended by patients with similar side effects with other Hep C Protease Inhibitors that I need to investigate:


The only thing that did stop the itching was a pill called Atarax.  Its not a over the counter drug and your doctor has to write a prescription.  The itching was so bad I wanted to stop tx until I started the Atarax and it was the only thing that worked.  


triamcinolone acetonide cream usp. this is my rx, It is 1lb, and I have 6 refills


finally getting the rash under control with the solumedrol


Some parts looked like eczema.  Other parts like my neck just went a uniform angry red and I had to put ice packs on day and night to make the burning bearable. I got really wore out and fed up inspecting it every day and seeing one part die down just to see another part start to flare up. It was a total bummer. Lasted the whole month of July, then gradually the inflammation died down.  I had to treat with Elocon steroid cream the whole time.   


 I had some of the common riba rash issues during tx, but Lidex cream and Zertec antihistimine cleared it up in a few days. Wish I had that treatment earlier, because the itching was hellish! 


At that point, my dermatologist told me this was one of the most extreme allergic reactions she had ever seen.  The rash had converged, if you will, into one large continuous red area that covered, as she said, 90% of my body.  The term she used was confluent.  If you didn't touch it, it looked just as a really bad sunburn would.  There were no longer any indivdual bumps, they had all joined together at this point.  It caused extreme chills and fever and was hot to the touch, as an extremely bad sunburn would be.  I was always cold and taking a shower was excrutiating.  It zapped my strength and the itching was like nothing I've ever experienced before. 

Derm  prescribed Prednisone with a taper schedule of 21 days, however, my study doctor allowed me to stay on all meds for an additional day or two to see if the prednisone would work.  He was very clear that if the prednisone didn't clear it up quickly, I had to completely come off of the study, including SOC drugs. 


THIS IS WHERE I WILL NOT GO:


 But this rash is soo bad I hardly recognize myself. I'm covered fromhead to toe. I bath,shower 10 times a day, have tried every lotion, potion and perscription pill known to man. I lay in bed with up to six bags of ice at a time. I have never experienced so much pain  in all my life. It has now traveled to myface as well as other places too sensitive to discuss. I AM DONE! 12 weeks of torture.


For three weeks the rash kept increasing in area and intensity of pain.  I was panicking about what was going on.  The Hep Service nurse said it is common to have itch and rash so I kept on taking the treatment.   I finally couldn't take it any more so I stopped after taking with my family doctor and the Hep nurse.  After I stopped, I talked with a  dermatologist, and the Hep Specialist who said I was having an adverse reaction to the medication and it was a good thing that I stopped as it could have become life threatening.   It took about 10 days for the rash to clear but I still feel itchy at night.  Hopefully that will stop as well.  The side effects I was having until week 15 were not that bad to manage but the rash was too much.  Now I am waiting to see if the treatment cleared the virus.  The Hep specialist is doubtful but I am keeping up hope.


And something more...

Skin Care:
The dry skin from the interferon and the Riba-rash can be potentially very big sides from treatment.  It seems to affect fair skinned people the most.  Many describe the feeling as being like little bugs crawling all over your body.  Your skin is also dry and very sensitive from the interferon.  Freyja is sure that the Princess from the Princess and the Pea must have been on interferon treatment!

Your skin is your largest organ, and skin integrity is very important to your overall health.  Spend time on it, do some preventative maintenance on it - before it gets bad.   Your skin will heal slower due to low platelet counts and lower white blood cell counts (WBCs) which can make fighting infections more difficult and slow the healing process. The human body is an incredibly complex entity, when you are on interferon, your body is told that the a number one task is to fight viral infections. Unfortunately this leaves you open to bacterial and fungal infections, so use common sense.   also see Infection

Winter is also a drying season, run a humidifier, take warm, not hot showers, don't take baths (soaking can be very drying and irritate your skin), tap water contains a lot of chlorine.  Chlorine is a bleaching and color oxidizer which dries and strips your hair and skin of natural oils and color during a hot shower or bath.   Chlorine also absorbs into your skin through your pores.  This can aggravate sinuses, irritate eyes, and cause rashes.  Try to get a Chlorine filter for your shower head.

When showering, try to use a mild non-perfumed bath soap or gel.  Deodorant soaps may contain chemicals that could be hard on your delicate skin.  Use a soft cloth, no hard rubbing or scraping!  Do not pick at your blemishes!

Try to put only soft natural fibers next to your skin.  If you wear a bra (not occasionally but every day), get an all cotton one to reduce the irritation from the elastic.  Victoria's Secret has a wonderful line of soft stretch bras, or get an all cotton sports bra.  Carefully cut out those scratchy plastic tags in the back of your clothing.  Do not violently rip them out with your teeth as Lacey and Freyja did, it will leave holes in the back of your clothes.

Here is an overview on three approaches to skin care while on combo:

Over the counter:  To help preserve your skin integrity use a good lotion on your skin every day, am and p.m.-especially when getting out of the shower.   This stuff is excellent! Call your pharmacy and ask if they carry Aveeno lotion (made with colloidal oatmeal), if not, they can order it for you. Does not require a prescription.  Good to keep the itching at bay, good overall moisturizing lotion to use everywhere before dry patches, cracks and sores form.  Bag Balm (also known as Udder Cream) is also a good moisturizer (if you can stand the smell!). Eucerin Lotion is also inexpensive and great for dry skin.

For the face, I like PX Prescriptives-Flight Cream - "Instant Help for Dehydrated Skin" for the "Mummy Skin" on your face (your face will be as soft as a baby's butt, but your wallet will be hurtin'-$36 for a 1.7 Fl. oz tube that lasts about 2 months). Full of aloe, eucalyptus , and other great stuff, can slap it over makeup-sinks right in, no smearing.

If you start to get the "Riba-Rash" (small blister like eruptions that itch like hell-look like flea bites and leave oozing sores when scratched) get a hydrocortisone cream or Benadryl or Gold Bond lotion-they seem to help somewhat.  Downside: If you've got it bad, they usually don't last more than 4-5 hours at best.  Not enough for a good nights sleep.   Hot showers seem to aggravate them.

Homeopathic: Calendula lotion (made from Marigold flowers) helps sooth skin, aides in healing.  Here is a link I wrote about it with a place to get it on the web:http://my.webmd.com/roundtable_message/221527.

Prescription: If all else does not provide you with consistent relief, and you are tearing your skin up- then ask your doctor to  prescribe a good antihistamine.  You are having a severe allergic reaction to the Ribavirin, it's not uncommon at all.  I use Zyrtec, it goes right to the skin, does not make me drowsy. I’ve also heard good things about Claritin (also by Schering) and Allegra.  Also, ask your doctor forFluocinonide Cream USP 0.05, even doctors use it for their cracked skin from all the hand washing.

Freyja gets Elocon from her primary care physician. Can you guess who sells it? If you guessed Schering you get 100 points!

If you must scratch your itches, Pier One has excellent bamboo back scratcher for about .80-get many and put them around your house, they work much better than steak knives or screwdrivers!  Scratch gently!  Do not tear or rip your skin.

Lotion applicator- apply lotion to your back, if you don't have someone to do it for you, order a lotion applicator from a senior catalog -try Dr. Leonards-1-800-785-0880 - ask for #921 its $5.99.

 Info About Boehringer Ingelheim 201335


 The side effects attributed to BI 201335 were jaundice (no severe cases) and rash (severe cases–0.7 to 5.8%) and were found to be dose dependent. 
The PegIFN sparing treatment was well tolerated. Investigators reported that the most common adverse events observed in the study were mild gastro-intestinal effects (diarrhea, nausea, vomiting), rash or photosensitivity. 


Skin rash or photosensitivity reactions (mostly mild-to-moderate): 33%, 40%, and 59%, respectively; 1.3%, 0.7%, and 6%, respectively, developed severe rash. 4% of patients discontinued treatment prematurely due to adverse events (rash, photosensitivity, or jaundice) in the 2 once-daily groups, compared with 24% in the twice-daily group.


The most common side effect was rash and it was observed in 59% of the patients who received the 400 mg dose. 


The company reported potential side effects from the two oral compounds including itchiness, rash, photosensitivity, jaundice, nausea, vomiting and diarrhea.


Weakness, itching, rash, hypersensitivity to sun exposure, yellowing of the skin and eyes, nausea, vomiting and diarrhea were the most common side effects in the study, occurring in more than 25 percent of patients. Between 6 percent and 12 percent of volunteers have discontinued treatment because of side effects, with most dropouts occurring among those receiving once-daily BI 201335, three-times daily BI 207127 plus ribavirin. 


Adverse Effects with Protease Inhibitors

 A sudden and severe cutaneous[outer skin]–mucous[inner skin]hypersensitivity reaction occurred, characterized by a diffuse, maculo[blemish-]papular[pimples]-orticarioid[irritation] rash accompanied by intense itching...  During the subsequent week of intensive care, including fluid-electrolyte management, steroid-albumin administration, and erythrocyte transfusion, the skin rash evolved into a desquamative phase with extensive epidermal detachment, whereas a normalization of all liver–kidney–myelopoietic parameters became almost complete 16 days after HAART interruption, and did not show relapses during the subsequent follow-up... In [treatment group 1] 1 individual withdrew from the study with rash...in [treatment group 2] 2 participants withdrew from the study, 2 due to rash...

 Severe rash associated with blistering, moist desquamation or ulceration has been reported in less than 1% of patients treated with STOCRIN. The incidence of erythema multiforme or Stevens-Johnson Syndrome was 0.14%. STOCRIN should be discontinued in patients developing severe rash associated with blistering, desquamation, mucosal involvement or fever... Rashes are usually mild-to-moderate maculopapular skin eruptions that occur within the first two weeks of initiating therapy with STOCRIN...

Rash

Rashes often appear as a side effect of antiretroviral treatment. These may be itchy but are usually harmless and short-lived. However, severe rashes can occur with nevirapine, and more rarely with some other drugs. Any rash occurring during the first few weeks of treatment should be reported to a doctor immediately, as should any rash accompanied by fever, blistering, facial swelling or aches. A rash occurring with abacavir may indicate a very dangerous hypersensitivity reaction, as described later in this page.

Tips for coping with rashes include:

• Avoiding hot showers or baths
• Using milder toiletries and laundry detergents
• Wearing cool fibres such as cotton, and avoiding wool
• Humidifying the air
• Trying moisturizers/emollients or calamine lotion

Antihistamine tablets can sooth rashes and are generally available without a prescription. However, because these may interact with antiretroviral medications, patients should check with their doctors before using them. More severe skin problems may be treated with steroids.