Link between Shingles & MS

From the Winter 2011 NMSS Greater New England Chapter MS Connection:

“Researchers in Taiwan have reported that people who experienced an attack of the virus-triggered herpes zoster–which usually shows up as the skin rash known as shingles–were more than three times as likely to develop MS over the next year than individuals who did not have an attack.”

Shingles Vaccine Shortage

A combination of factors has dissuaded many physicians’ offices and clinics from carrying Zostavax. And its manufacturer, Merck, has been unable to produce sufficient quantities to meet even modest demand.

• The vaccine is made with a live attenuated virus that has proved difficult to grow in bulk, and also is needed to make the childhood chickenpox vaccine.
• Zostavax is the most expensive adult vaccine, selling for about $160 a dose, not counting the cost of an office visit and injection. Few insurers will currently cover the cost for patients under age 60.
• Because the vaccine must be stored frozen and few doctors’ offices are equipped with freezers, many patients must turn to pharmacies for the shot.

Intermittent shortages that last months have kept the company from consistently marketing the vaccine and have forestalled public health campaigns that could have built awareness of the need for it.

From Drive to Stem Shingles Meets Few Expectations by Paula Span, NYT. Please read the entire article.

Shingles Vaccine

Zostavax, as the vaccine is called, was approved in 2006, based on the results of clinical trials. The U.S. Centers for Disease Control and Prevention recommends the shot for eligible people aged 60 and older.

Tseng’s team wanted to test the vaccine’s real-world performance, so they compared 75,761 vaccinated members of the Kaiser Permanente health plan to 227,283 members who elected not to have the shot. Kaiser funded the study.

In vaccinated individuals, the rate of shingles was 6.4 cases per 1,000 people in a year while it was twice that — 13 per 1,000 — in the unvaccinated population, the investigators found.

The vaccine also reduced the risk of ophthalmic herpes zoster (infection that affects the eye) by 63 percent and hospitalization by 65 percent.

 

Because shingles is not contagious and doesn’t present a risk of death, [Dr. Bruce Hirsch, an attending physician in infectious diseases at North Shore University Hospital in Manhasset, N.Y.] said he would recommend the flu vaccine and the pneumococcal vaccine over this one for uninsured patients who would have to pay out-of-pocket.

“This study helps me in terms of advising patients and prioritizing,” Hirsch added.

 

 

While less reliable than some childhood vaccines, which are usually 90 percent effective in preventing certain illnesses, the shingles vaccination is still worthwhile, said Dr. Ciro Sumaya, professor of health policy and management at Texas A&M Health Science Center School of Rural Public Health.

For now, he advises getting it. “It’s protecting against a severe disease, particularly in elderly adults,” he said, “so the benefit, I think, is overwhelming that we should be using this because it’s recommended.”

Read More http://www.ivillage.com/shingles-vaccine-looks-safe-bet-seniors-study/4-a-313247#ixzz1ArX9so45 

 

I think you all know where I stand on this vaccination. If you can possibly get it, do so. I think it should be covered by insurance companies, because the effects of shingles can be severe and disabling. It’s accurate to say that shingles won’t kill you while the flu or pneumonia could, but that ignores the possibility of long-term pain, or even blindness in the case of opthalmic herpes zoster. 

 Always consult your doctor before making any health decisions.

Check out my previous post on shingles and post-herpetic neuralgia here.

Why are ever-younger adults contracting shingles?

Here’s why: according to studies conducted in the 1960s by the British GP and epidemiologist Robert Edgar Hope-Simpson, those who are repeatedly exposed to chicken pox—health care workers, say, and families with young children—are less prone to a reactivation of the virus. Greater exposure actually lessens the risk of shingles. It follows, McGeer says, that the immune systems of young adults who didn’t get the varicella vaccine won’t have that extra boosting that would help prevent shingles—the younger, vaccinated generation won’t provide any exposure. So adults in their 20s and 30s have two strikes against them: they’ve had the virus, so it can be reactivated, and they haven’t had the exposure that would heighten their immunity. “They are going to have a problem,” concludes McGeer. [Source]

PHN Awareness Day.

The American Pain Foundation (APF) has designated September 16, 2010 as the second annual PHN Awareness Day.

The second annual awareness day. I think from that you can tell how unaware people are of and about PHN. Yes, even doctors. Yes, even doctors who specialize in nerve damage. And especially me in mid-March 2008 right before I got that awful pain in my arm.

What’s PHN? PHN (post-herpetic neuralgia), is nerve pain caused by complications from shingles. During the shingles infection nerves (usually but not always near the shingles rash) become damaged. The damaged nerves send abnormal (and extremely painful) signals to the brain, or as my doctor put it the nerves “freak out.” The pain can recur for months, years, or even become permanent. As of right now, there is no cure, there are only various ways to manage the pain.

How bad is the pain, really? The pain from PHN can be disabling. The thing about the PHN is that it’s chronic pain. I never realized how exhausting that could be until I experienced it for myself. For me, there are five distinct different types of pain and sometimes they combine. First there’s the numbness and tingling, that one’s not so bad except when I want to, say, type or use my hand. Then there’s the feeling of having long, sharp needles poked into my flesh. Then, the feeling of electricity coursing through my nerves, which often makes me twitch. That one’s especially fun because it feels as if my nerves are constantly firing. Then, my favorite, the weird and constant itching that is impossible to resist so I scratch and then endure excrutiating pain. That last one is often combined with the allodynia, or as I like to think of it, the jackpot of PHN symptoms. The hypersensitivity of my skin and nerves makes everything hurt worse and longer. Allodynia is the worst, the absolute worst. Allodynia makes it so that the feeling of my own breath across the skin of my arm is excrutiatingly painful. So is the brush of my shirt, a piece of paper, the heat from the sun.

What can you do about the pain? You can try many different drugs, ranging from lidocaine patches to deal with surface pain, to anti-convulsants (which can leave you groggy and with brain fog), to tricyclic anti-depressants, to opioids. You could also try TENS (electrical stimulation of the nerves). So far I’ve personally had no luck with any of the drugs, though I’m reluctant to try opioids because of their addictive nature.

How do you get PHN? Anyone who has shingles has a chance of getting it, some say the ratio is 1 in 5. It’s more common to get PHN as you age, with people 50 and older having a 50% chance of getting PHN and people 80 and older having an 80% chance. [Source]

So what’s Shingles? Shingles can first manifest as pain in a certain area. You may experience itching, burning, or tingling sensations. Later, a painful rash or cluster of blisters appears. The rash is very painful and can leave permanent scars. Depending on its location, it can also cause damage to nearby body parts, such as eyes.

How do you get Shingles? You ever had chicken pox? Then you can get shingles (herpes zoster). The chickenpox virus (varicella zoster) can go dormant in your nerve tissue after an outbreak and it can stay quiet for a long time until it pops up years later to cause shingles. Approximately 1 in 3 people will get shingles in their lifetime, with people 50 years or older, who have weakened immune systems, who take certain drugs, and who are suffering severe stress being at higher risk. [Source] The risk of getting shingles again is also 1 in 3. [Source]

So if I’m under 50 and/or never had chicken pox I’m safe, right? That’s what I thought. I was 38 when I got shingles and to my knowledge I’d never had a solitary chicken pox anywhere on me. I must have had such a mild case that even my mother never noticed. Since I got shingles I’m finding more and more people well under the age of 50 who not only had it but who, like me, went on to get PHN. I’m thinking that 1 in 5 ratio is either way off or far more people are getting shingles now than ever before.

Then what do I do to protect myself? There is a shingles vaccine, Zostavax, that was approved by the FDA in 2006 for people 60 and older. It is said to prevent or reduce the intensity of a shingles outbreak. It is currently not covered by all health insurance plans. If you think you have shingles, get to the doctor as soon as possible. Early treatment with an anti-viral medication may lessen the duration and intensity of your shingles infection. (Note: I took an anti-viral well-within the 72-hour period, had a very painful infection, and still ended up with PHN. There are no guarantees, but err on the side of caution.) You may also be prescribed topical and/or oral painkillers.

What’s the bottom line? As a PHN sufferer I’d say that right now things look pretty grim. There is nothing you can do to prevent yourself from getting shingles (if you’ve ever been exposed to the varicella zoster virus) and if you do get shingles there is nothing at all you can do to prevent yourself from getting PHN. If you do get PHN, there are no drugs specifically made for it (don’t you believe what Lyrica says on TV, they’re an anti-convulsant called pregabalin), though some of the drugs may work for you, at least to a degree. The best thing to do is be aware of the traditional shingles pains–itching, burning, tingling–and rash, and see your doctor immediately if you suspect you might have shingles. If you can afford it (the cost ranges from $200-300) you might want to get the vaccine yourself, despite your age and health insurance coverage.

Findings from a survey about shingles/PHN.

The American Pain Foundation (APF) announced today at the American Pain Society (APS) Annual Meeting the results of a national survey that showed postherpetic neuralgia (PHN), also known as after-shingles pain, continues to be a condition with low awareness amongst Americans, demonstrating a need for health care provider (HCP) intervention. … The condition affects approximately 1 million people in the United States every year, and one in five of those who suffer may go on to develop PHN, which results from nerve damage caused by the shingles rash. For some, the PHN pain can become so severe that it significantly impacts quality of life. PHN is one of the most common causes of pain-related suicide in older Americans.

Key findings from the 414 people surveyed who have had shingles include:

A Lack of Education and Communication about PHN

• While nearly 60 percent of respondents said their physician mentioned  burning, aching, sharp or itching pain in relation to their shingles outbreak, only one-third reported being told by an HCP about the possibility of developing PHN
• Of the survey respondents who first experienced after-shingles pain, almost half (42 percent) did not think that it was related to their shingles rash in any way

The Prevalence of PHN

• Fifty-one percent of survey respondents reported experiencing pain, shortly after or within months, after their shingles rash went away
• Among respondents who experienced PHN, 16 percent reported that after-shingles pain lasted for 15 weeks or more
• More than half of respondents said the pain they experienced after having shingles was more frustrating than actually having shingles

Treatment Option Preferences

• More than 70 percent of respondents were interested in using a topical treatment, alone or in combination, to relieve after-shingles pain

[Source]

Learning to be disabled in my own way.

It was only recently I was told in a very gentle voice, “You’ve gone past the time when this would have healed itself.”

Well.

I’ve had post-herpetic neuralgia (PHN) since having shingles in 2008, and it was just the end of 2009 when I started to adjust to the fact that it wasn’t an illness, something that was temporary, but was a long-term disability. That was a difficult adjustment, learning to use that word, to apply the “disabled” label to myself.

One of the things I struggle most with is the concept of my own rights. Do I have the right to tell or not tell about my invisible disability? Do I have the right to say no, even to myself and my own desires? Do I have the right to reject treatments and pain management drugs because I prefer the pain of PHN to the side-effects? Do I have the right to be disabled in my own way?

Shingles, Post-Herpetic Neuralgia, and Me!

I came down with shingles in March 2008 and as a result of it I now have post-herpetic neuralgia. It isn’t common to get shingles at my age. It isn’t common for anyone to get post-herpetic neuralgia (PHN), a chronic pain condition/disability that can’t be treated, just managed. I hit the lottery on this one! [If your doctor offers you the shingles vaccination–take it! Trust me on this, take it!]