Coping with shingles

Hi Joseph sorry to read you have this now on top of everything else your going through .which is typical when you immune systems down .It does make you feel rather lousy im afraid.where do you have the shingles..remember its the zostr virus and attacks the nerve endings

I agree-the pain is horrible- I am a 70 year old woman who has always been fit, works out a lot and has had a healthy life- shingles hit in May on my right side, front and back-lasted 3 months. Very tired, painful and depressing.  Who would have thought.? Gabapentin helped me a lot, swimming in a cool pool helped, and then rest.  Hopefully you will feel better soon.  Get the double shot as soon as they go away according to your doctor.  I have to wait until December.  Good luck

Hi Joseph,

Sometimes, when life has you down, it just adds a little extra to kick before you get up again.

I am so sorry you are going through this right now. I understand the agonizing, lancinating pain, sleepless nights, and suffering of Herpes Zoster-Shingles.

I am a Nurse Practitioner in the States. I have had Herpes Zoster-Shingles in my right ear, mouth, and throat every three to five weeks for the past twenty-two years and twice in my right eye. It has now escalated to include my entire right scalp, as well, just to keep me doing more headstands, I am certain.

I have had breast cancer and a couple of strokes, just to make my life more interesting. I understand how difficult it is to breathe a sigh of relief and then have Shingles whack you

This is a summary of the stages, signs and symptoms of Herpes Zoster-Shingles, and medical management of the disease.

During the Pre-eruptive Phase, you may have some of the following symptoms:

(The duration of the pre-eruptive phase is one to ten days, but the rash occasionally takes much longer to appear. )

Headache

Photophobia

Generalized Aches and Pains

Fever, Chills, and Sweating

Enlarged Lymph Nodes near the pain and rash

Fatigue and Exhaustion

Pain usually preceding the rash, but not always

Itching

Description of pain: deep burning or aching pain, or electric shock–like pains.

Acute Eruptive Phase

Rash of grouped vesicle-blisters in a dermatomal pattern.

Occurs in waves or crops over a period of 5-7 days.

Vesicle-blisters look dissimilar and are of different sizes.

The rash is on a red base.

The pain may continue to increase into the second and third week.

The clear vesicle-blisters cloud over, look like pustules, scab over, and turn black. This process may take between 2-4 weeks. Once every vesicle-blister has scabbed over, you are no longer infectious!

You are considered infectious (contagious) if your rash is open to the air, ie not covered, to anyone who has not had chickenpox. This includes all pregnant women! Remember, not all women know they are pregnant!

Chronic Phase (Post Herpetic Neuralgia PHN)

30 days after onset of rash, the definition of course varies.

Duration may last months or years after initial episode of Herpes Zoster-Shingles.

The resolution of the scars can take up to a year to heal.

Management and Medications

ANTIVIRALS: THE CORNERSTONE OF TREATMENT

Famciclovir 500 mg 3x daily 7-10 days, sometimes 14 days.

Smallest Tablet

Convenient dosing

Least Resistance

Valcyclovir 1000 mg 3x daily 7-10 days

Large Tablets difficult to swallow for some

Based on Acyclovir

Acyclovir 800 mg 5x daily 7-10 days

Inconvenient Dose Schedule

Growing Resistance to Varicella Virus

Acyclovir is the antiviral most often prescribed in the UK

What dosage of the medication are you on? Sometimes, the physician places the patient on a lower dose, but needs to increase it to help with the pain-itching.

Sometimes, you need to be placed on a cocktail of medications, as they will work synergistically to help you. These are all by prescription. I have grouped them according to class. A clinician would start with one from the Anticonvulsant class, taper the dosage up, then one from the

Antidepressant Class, etc. This list is by no means complete.

ANALGESICS

NSAIDS

Ibuprofen

Naprosyn

Acetominophen

OPIOIDS

Oxycodone

Hydrocodone

Codeine

CBD

ANTI-CONVULSANTS

Gabapentin-Neurontin

Pregabalin-Lyrica

ANTI-DEPRESSANTS

SNRIs

Cymbalta

Effexor-Venlafaxine

Heterocyclics

Nortriptyline

Amitriptyline

2. I would find 100% cotton knit clothing. Make sure there are no seams to irritate your skin. The cotton knit is the most breathable, least irritating cloth to most individuals.

3. Use Lidocaine Cream or Spray OTC topically to help with the pain- itching, eg, Solarcaine with Aloe or Bactine. Many on this forum feel either Lidocaine or Benzocaine help with the pain-itching. The cream might soothe the inflamed nerve endings better and last longer on the skin. You can only use Lidocaine 12 hours on and 12 hours off, as the usefulness will extinguish itself.

4. Use ice or cool compresses. Do not take hot showers, as it will only increase the pain-itching

5. You need to rest and sleep. You cannot power through this disease. Do not go back to work! This virus is way stronger than you are, and you will only get more pain, the more exertion you do.

6. Most Importantly, get the Shingrex Immunization. It is a two phase vaccine, two months apart. It is given intramuscularly. It is highly efficacious in stopping Post Herpetic Neuralgia PHN and recurrent episodes of Herpes Zoster-Shingles.

Shingrex is available in the US at the pharmacy and covered by insurance if you are over 50 years of age. If you are younger than 50, and have had a documented case of shingles, it is still covered.

If you are in the UK/Canada/Australia/NZ, I know it has been distributed there, but the national health insurance may not cover it until age 70, which is ridiculous. It is expensive, but I would have paid thousands not to have recurrent shingles.

Regarding the Shingrex: as you have Leukemia, the decision would be up to your oncologist. Shingrex is a killed virus, so there is a good possibility of your being able to have the Shingrex.

I am truly sorry for your having leukemia and shingles. I know how it feels to have cancer and shingles. I hope you have a supportive family who understands and is there for you through everything. I also hope you have excellent medical care where you live and can trust your physicians and nurses implicitly.

Please let me know if I can help you in any way.

I find that Bactine (lidocaine) is very soothing on my scalp, as is a Corticosteroid spray. I also use ice on my scalp.

I use Auroguard (Benzocaine) ear drops. These topical measures do help decrease the pain/itching/spasms of Neurogenic pain.

Hopefully, you received strong analgesics. If you are in pain, and haven't received adequate pain relief, you need to ask your physician for stronger analgesics, ie, Opioids, Gabapentin, based on your medical profile, allergies, etc.

Best Wishes,

Merry Juliana