Shingles will not go away!

Hi Will,

I too have recurring shingles although, thankfully, the recurrences have been fairly mild. Mine started 27 months ago. After the fourth or fifth recurrence in a relatively short span of time, my GP arranged for me to have blood and urine tests, which showed that I had an immunity issue.

There is very often a reason why people keep coming down with shingles. It may be down to lifestyle as all manner of stress can be a factor, but there may be an underlying condition and it's important to get it checked out.

My underlying condition is something called MGUS, which is quite benign although it can be a precursor to a myeloma so I now get checked every 6 months. It means that I have a 'rogue' immunoglobulin, that suppresses my normal immunoglobulin.

I would never have known but for my GP's vigillence, and I could have gone on to develop a full blown myeloma before anything was diagnosed. 

So my recommendation is to request blood and urine tests, including the test for MGUS, which is often off GP's radars.

Best wishes,

David

Hello.  I can appreciate your position.  Its a nightmare when it keeps coming back.  For me, it has been more of an issue with fatigue than anything else.  From researching the issue, it does seem to be the case that some people get recurrences due to a weakened immune system, I had a number of tests done and no issues with immunity were identified, so it seems that there is still a bit of an unknown/random factor with Shingles.  I've spoken to a friend who is a doctor and the only advice is to work on general lifestyle - diet, exercise and fresh air.

Hi Will,

Is it high heat or exposure to UV rays?

Any fatigue, exhaustion, and or stress are contributing factors that trigger Herpes Zoster-Shingles. Exposure to UV light is another trigger, as is physical exertion.

Even though my CBC is supposedly normal, the lymphocytes are low, which means I can't fight infection as well. I have some autoimmune diseases, which were not readily apparent when I started this adventure 22 years ago. I get Herpes Zoster-Shingles in my right ear every three weeks for the past 22 years and twice in my right eye. It has now escalated to my right scalp. I also have difficulty swallowing with the Herpes Zoster-Shingles, due to the ear Shingles. I just received the first of two Shingrex injections.

BTW: it takes your body a couple of months to mount an immune response to a vaccine, plus you need two injections of the Shingrex.

What I am telling you is you need to give Shingrex a few months to see if it is going to help you. It depends on whether your immune system can mount an immune response to this particular vaccine. Did you react to the Shingrex vaccine? Sore arm? Feel exhausted, weak, etc after the Shingrex?

I am a Nurse Practitioner in the States.

I did the Vitamin D and my level was 14, raised my level to 60. It helped to attenuate but not eradicate the episodes. I also do the High Lysine Low Arginine diet. Again, it helped, but now the Zoster-Shingles has escalated. I also had breast cancer (excellent prognosis) three years ago, which I am certain worsened the Herpes Zoster-Shingles for a long time.

I will send you the information I have compiled for acute and recurrent Herpes Zoster-Shingles. May I ask your occupation?

Best Wishes

Merry Juliana

Hi Will,

This is the information I send to most individuals. You are well informed regarding this disease, but obviously something more is going on. As a veteran of this disease, I found most clinicians know almost nothing regarding this disease. Some are abysmally ignorant. You would need an excellent hematologist/oncologist associated with a university to work you up, plus a rheumatologist for autoimmune disease. Most have no inclination or interest.

Legumes, nuts, and chocolate are huge triggers in precipitating shingles, BTW, as is UV light.

HERPES ZOSTER-SHINGLES ACUTE

REPETITIVE INFORMATION

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

I am a Nurse Practitioner in the States. I have had Herpes Zoster-Shingles in my right ear every three to five weeks for the past twenty-two years and twice in my right eye.

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:

Duration 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

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. Definition 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.

RECURRENT HERPES ZOSTER-SHINGLES

I empathize with you regarding the agonizing pain, fatigue, exhaustion.

Also, not all your friends and family understand the excruciating Neurogenic pain and flu-like symptoms that accompany Herpes Zoster-Shingles.

Here is what I recommend to reduce the frequency and severity of pain of episodes.

1. Get the Shingrex Immunization. It is a two stage vaccination two months apart. It is an intramuscular injection. It is highly efficacious in stopping recurrent Herpes Zoster-Shingles.

It is available in the US at the pharmacy and covered by insurance. If you are younger than 50, and you have had shingles, it is still covered. You might need a note/ prescription from your Physician.

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.

2. Google High Arginine Low Lysine Diet and Herpes. The amino acid Lysine helps prevent Herpes Zoster-Shingles, and Arginine triggers Shingles. Chocolate, Nuts, and Legumes are all high in Arginine.

3. Avoid the sun, UV radiation, as it triggers Shingles, big-time!

4. Try taking either Valcyclovir or Famciclovir as a maintenance dose daily. It does help some people. Do not take Acyclovir, as the Herpes Zoster-Shingles virus has developed resistance to this Antiviral. It is the oldest, and does not work, especially on people with recurrent Herpes Zoster-Shingles.

5. Remove stressful ie toxic people from your life! Easier said than done, I know, but...if you have "so called friends" that are just using you, get rid of them. Family members who are entitled? Learn to say "No!"

6. Is your job poison? Change it!

You need to examine your life, delegate what you can, and rid yourself of the stress when you can.

Stress is your enemy!

7. Do you have any medical conditions predisposing you to Shingles?

Autoimmune Diseases: Systemic Lupus Erythematosis-SLE, Psoriasis, ITP, Rheumatoid Arthritis, Gout

IBD, Crohns, Ulcerative Colitis

Chronic Kidney Disease, Diabetes Mellitus

Cancer, Blood Dyscrasias, Leukemia, Lymphoma

Medications: Corticosteroids or DMARDS

Prior Trauma or Surgery near or at the shingles site

Older Age

Make certain you are in control of your health and get top-notch Physicians you can trust!

I feel for you so much, as I know how painful and how lonely it is to suffer with no end in sight.

Please let me know if this helps you.

POST HERPETIC NEURALGIA PHN

Sorry you are still dealing with the aftermath of Herpes Zoster-Shingles. As you still are having pain-itching, you have Post Herpetic Neuralgia PHN.

1. What dosage of the medication are you on? Sometimes, the Physician places on 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.

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. 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. You can only use Lidocaine 12 hours on and 12 hours off, as the usefulness will extinguish itself.

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

5. Most Importantly, get the Shingrex Immunization as the vaccine has been helping decrease the pain and itching of Post Herpetic Neuralgia PHN.

It is a two phase vaccination two months apart. It is an intramuscular injection. It is highly efficacious in stopping recurrent Herpes Zoster-Shingles.

It is available in the US at the pharmacy and covered by insurance. If you are younger than 50, and you have had shingles, it is still covered. You might need a note/ prescription from your Physician.

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

Best Wishes

Merry Juliana

It may be that your acute phase is dragging on a long time as it can do, and things like good vitamin replacement and high lysine diet should help build up your resistance. If it’s not so bad this time, hopefully that is the case, and it will all tail off. However, you need to look at whether changes can be made at your workplace to help you. The HSE website has a leaflet INDG451 on employers’ duties re Heat Stress, and they also have duties on things like reducing stress.  Stress at work, sudden changes from low to high temperature, too much sun, and heat stress are all known triggers for shingles. You are entitled to “reasonable adjustments” or at least a temporary/permanent swapping of job role, if that’s at all possible. Easier said than done of course. If you’re in a trade union, you should be able to get some help with all of this. ACAS is one of the organisations that can advise, if not. HSE might be able to advise, but neither of these is likely to do anything compared to what a safety rep at work could maybe do: though I admit I’ve never seen literature on shingles as work-related illness in all my years in occupational health. However, it may become clearer in future that you are always going to react to the same triggers, and you may be faced with the fact that you can’t continue in that job, and if so, it’s best if you are in a union to get the right advice on your options at that point. There are other relevant advice agencies around e.g. some Hazards Centres. At the very least, if there are any possible changes that could be made at work, and the employer ignores your requests, (put them in writing) you just might be able to sue them if you continue to be made chronically ill, but you would need much better advice at that point e.g. at least a free half-hour with a personal injury solicitor, or the union solicitor, if that looked at all likely. I don’t know of previous legal personal injury cases involving shingles, though nowadays there are some involving stress. Don’t know what your sick pay scheme is like, but maybe you need to be off long enough for your body to be really back to normal before you try to work in that environment again, before you can be sure if you’re always going to react to these triggers that you face there. Getting your GP to really understand this would be important here. Despite the fact that you may need all that time off, you need to realise that you can still get sacked for “frustration of contract “ if you are off for a very long time. So, your options are not wonderful, and I wish you all the best. I think, if it was me, I would be looking to see if I could get some online re-training towards another kind of job, or something like that, in case that is what it comes to in the end.