A pain like no other

Having given birth to her oldest daughter by natural childbirth, Karen Anderson thought she knew something about pain, but a shingles attack on the right side of her face and scalp was far, far worse than anything she had ever experienced.

“The pain was a throbbing pain like someone had punched me in the face; a burning pain like someone had held a hot flatiron against my face and a stabbing pain like someone was randomly throwing needles at me,” explained the 66-year-old, retired attorney whose second attack of shingles occurred last March.

And yes, the spring shingles attack was the second one Karen experienced.

The first one occurred when she was in her 40s when the varicella-zoster virus that had produced a childhood outbreak of chickenpox and then hid out in the cells of her nervous system for decades was reactivated as shingles.

About one million Americans who had chickenpox as a child suffer a shingles attack each year, according to the Centers for Disease Control and Prevention.

About 80 percent of those attacked by shingles experience classic symptoms: pain followed by an outbreak of oozing blisters on the chest, thigh or, as Karen experienced decades ago, around the waist, from midline in the back to midline in the front.

Now, the intensity of pain resulting from shingles can vary from one patient to another, so it no way reflects on the suffering of others that Karen, herself, mainly remembers her first attack as being “uncomfortable.’’

Karen’s description of her shingles attack in March is way different. “I discovered … that having it (shingles) in your face and eye is a totally different beast,” she recounts.

An outbreak of shingles “can affect the whole eye,” said Dr. Priya Janardhana, who, as the director of uveitis services at the UMass Memorial Eye Center, treats potentially dangerous inflammations of the eye, including those brought on by shingles.

“Starting with the cornea — the surface of the eye — there’s inflammation and scarring that can threaten the loss of vision quickly,” explained Dr. Janardhana. “The inflammation can also affect the back of the eye — the retina — with a vision-threatening disease called acute retina necrosis.

“Patients can lose their vision rapidly, as the disease damages or even kills off the nerve cells that react to light,” added Dr. Janardhana, who is also an assistant professor of ophthalmology at the University of Massachusetts Medical School.

Ideally, a patient with an outbreak of facial shingles will see an ophthalmologist within 24 hours or sooner after an outbreak of symptoms. “If they don’t have access to a primary care doctor or an ophthalmologist, then it’s important that they should go to their nearest emergency department or urgent care,” advised Dr. Janardhana.

Karen’s search for medical help did start off in the UMass Memorial Emergency Department, but for a problem seemingly unrelated to shingles.

“I woke up in the morning and the entire right side of my face was drooping,” she said. “I thought I was stroking out.” Her primary care physician’s office instructed her to go immediately to the emergency department where her problem was diagnosed, not as the result of a stroke, but Bell’s palsy.

“Bell’s palsy is due to an acute inflammation of the facial nerve — one of the cranial nerves,” explained Dr. Richard T. Ellison, an epidemiologist at UMass Memorial’s Medical Center where he specializes in infectious disease.

“Both the herpes simplex virus and the herpes zoster virus (the one that causes shingles) can cause this inflammation when they reactivate,” added Dr. Ellison, who is also a professor of medicine at the University of Massachusetts Medical School. (A shingles attack can also cause Ramsay Hunt syndrome, an inflammation of the facial nerves near one of your ears, resulting in hearing loss.)

While doctors were looking at the visible signs of Bell’s palsy, a sharp-eyed nurse noticed that just underneath Karen’s hairline on the right side of her scalp was a very, very small rash. Although Karen was experiencing some facial pain, pain that had started over the previous five days, nothing had screamed shingles, not like that tiny patch of red blisters.

Discharged from the emergency department with a prescription for a pain killer, gabapentin, as well as an instruction to follow up with her primary doctor, Karen realized, as the day wore on, that the pain was getting worse and the rash was spreading.

“I am not happy with something near my eye and … the rash was spreading, coming close to my right eye.”

The next day, Karen, who has Medicare and a supplemental health insurance policy and therefore did not require a referral, walked into the UMass Memorial Eye Center on the Hahnemann campus, which sees patients by appointment as well as walk-ins.

Karen’s worse fears were justified when an exam revealed that the surface and the interior of the cornea of her right eye was affected. At that point, Karen was prescribed Acyclovir, one of the three antiviral drugs — the others are Famciclovir and Valacyclovir — that are prescribed to combat the varicella-zoster virus. While these antiviral drugs can inhibit the virus’s ability to reproduce, they can’t actually destroy it, unlike antibiotics which can actually eradicate bacteria.

Besides the antiviral drug, Karen was also prescribed liquid prednisone acetate 1% eye drops, which are steroid drops, to help reduce the inflammation in her right eye.

A few days later, Karen did see her own primary care doctor who advised her that the dosage of gabapentin prescribed in the emergency department was a “baby dose, the smallest dose they could give you. It had had absolutely no effect. I was in so much pain, you can’t imagine.”

As Karen’s condition has progressed over the past six months it has only been recently that the dosage of gabapentin has been increased enough to give her “effective relief,” she said, relief needed now for another aspect of that shingles attack: postherpetic neuralgia.

According to a study by the American Academy of Family Physicians, about 20 percent of people who get shingles also develop this burning, shooting, jabbing pain in the area of the skin where the shingles outbreak occurred.

Besides pain, postherpetic neuralgia — the duration for which can range from one to three months to a year or longer — can also make a patient extremely sensitive to touch as well and produce itching and numbness.

“When I take a shower, the water feels like needles hitting my scalp. I also have terrible itching in my scalp, particularly my eyelid, which is still swollen,” said Karen.

Karen’s shingles virus has also shown to be particularly stubborn to treat, reactivating this past summer when an effort was made to find the lowest effective level of her medications.

Consequently, when a painful red rash appeared on the skin around Karen’s right eye and both the surface and the interior of the cornea became inflamed, there needed to be a return to previous treatment levels.

Now, another effort is being made to taper down the medications, but because the shingles virus reoccurred in Karen’s right eye after she completed a full course of treatment, she will have to remain on a low dose of antiviral medication for the rest of her life, according to Dr. Janardhana. Whether she will also have to continue to use the steroid drops has not yet been decided.

Now Karen — a smart and gutsy woman — had done everything possible to keep all this from happening, to be safe from shingles.

Five years ago, she was vaccinated with Zostavax, the only shingles vaccine approved at the time by the Food and Drug Administration and then approved only for people age 60 and older. However, the Zostavax vaccine has been shown to be only 50 percent effective against shingles.

Consequently, when the SHINGRIX vaccine — said to be 97 percent effective in people age 50 to 69 and 91 percent effective in those 70 and up — came on the market, Karen decided to be vaccinated with that one, too.

(It’s recommended that those who were vaccinated with the older vaccine be vaccinated again with SHINGRIX, which is administered in two doses two to six months part.)

However, despite numerous phone calls, starting in the fall of 2018, Karen couldn’t find the SHINGRIX vaccine available anywhere around here.

Then March came and Karen had run out of time.

Shingles vaccine more available

While the demand for the SHINGRIX vaccine remains strong, the supply side has also improved dramatically, according to Sean Clements, a spokesman for GlaxoSmithKline.

“GSK is distributing twice-monthly shipments of SHINGRIX in large volumes into the marketplace throughout 2019,” said Clements, adding that the company is expanding production of the vaccine, both in the U.S. and abroad.

GSK has also set up a “vaccine locator,” modeled after the flu vaccinator tool operated by the Centers for Disease Control and Prevention. The SHINGRIX vaccine locator on www.shingrix.com shows which drugstores and healthcare systems — along with locations and phone numbers — have received a shipment of the vaccine within the past three months. While it is not-up-to-date on a daily basis, it gives people a starting point.