My husband has CLL and is currently suffering from an ongoing bout of hideous shingles infection - almost a month so far with no respite in sight. His first time having this virus.
Two rounds of antibiotics and antivirals have not worked. He has just seen a Dermatologist for help and was told his immune system is not able to fight the virus or the secondary infection and has put him on Doxycline and Pregabalin (nerve pain) and prophylactic use of antivirals for 3 months to try and dampen down the activity.
I wondered if anyone out there has experienced a similar situation and could offer any insight thanks?
And any tips on what to use topically to relieve the pain/itchiness? We have tried a few things and currently using Nummit - a local anaesthetic cream.
Thank you for your time.
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Hartridge
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Welcome to our community - I see that you've just joined us.
Basically, shingles (herpes/varicella zoster) is a reactivation of the chicken pox virus, which stays resident where our nerves exit the spinal column. When our immunity drops with age, with the further compromising of our immune system by CLL or CLL treatments not helping, shingles can result as the reactivation of this herpes virus and typically spreads out on one side of the body, along the afflicted nerve. See: mayoclinic.org/diseases-con... and cdc.gov/shingles/about/inde...
Your husband has made a good start in seeing a dermatologist. That he is taking an antiviral (presumably valaciclovir or similar), as well as pregabalin and having topical anaesthetic are good starts.
The pain can indeed be hideous, but what works is fairly individual, so I'd advise seeing a pain specialist experienced in managing shingles pain. Orally, pregabalin and gabapentin have most likelihood of working, with pregabalin favoured. Panadol might help and opiates can be prescribed if other pain meds don't work. NSAIDs should be avoided, as they can suppress bone marrow production, increasing the risk of low blood counts (anaemia, thrombocytopenia, neutropenia). Unfortunately, how much pregabalin that can be safely taken reduces with age - while our risk of shingles increases. Your husband's GP might be prepared to temporarily approve a higher dose while the pain is particularly intense. It should reduce over time, but it stays on in 10 to 18% of cases as postherpetic neuralgia (PHN). and cdc.gov/shingles/about/comp... (I still have PHN, over18 months after developing shingles. The pregabalin knocked down my platelet and neutrophil counts.)
Topically, lidocaine might help and the pain specialist might recommend seeing a compound pharmacist to make up something containing capsaicin. Keep trying until you find something that works.
Long term, I would recommend your husband talk to his consultant about staying on a prophylactic antiviral permanently. A year after the onset of his shingles, he can have the Shingrix vaccination, which will hopefully reduce his risk of further outbreaks, but vaccinations aren't as effective when we have CLL. See: healthunlocked.com/cllsuppo...
Hopefully your husband will make a full recovery, but as I have discovered, if access to the antiviral is delayed, the risk of long term PHN is increased
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He is already on opioids for his spinal fusion last year.
So, a great cocktail for sure. The secondary infection/cutaneous cellulitis has been a challenge to get under control. It was spelt out to us how important it was to get on top of it all. Confronting!
I wish your husband all the best as I have experienced what he is dealing with and the pain is very intense. Nothing touched the pain, the itching and they tried every thing, I survived by wearing a wet t-shirt and sitting in front of the fan. I couldn’t stand anything touching my skin. The bad new is my nerve pain last over three years and to this day if I get stressed at all that tingling and itching return. This all occurred within the year after I knowingly took a huge risk by getting then original live virus Shingle Vaccine because I had witness my Grandma and my Mom suffered badly from Shingles and I told my doctor I was willing to take my chances and so I did. Little did we know at that time I had a very weak immune system so I was extremely lucky I didn’t have an issue at the time I received the live vaccine….i was just very lucky. My IgG was 150 and that is very low. I now am on IVIG every 4 weeks and I had the new Shingle vaccine as soon as it was available and I have had the antibodies checked to see if after 5 years if I should get the Shingrex series again but but my antibodies are extremely high for the Shingles virus. Because of this whole experience they check me every 5 years. The remaining nerve damage I will just have to live with it. Your husband has my sympathy believe me!!!
Hartridge, you should see a pain management doc, but Shingles / PHN is a generally miserable condition. Pregabalin/gabapentin works in 20-30% of the cases, but only if the dose is maximized wrt side effects. You should try many folk remedies like wearing a wet t-shirt below. Also consider using near infrared laser. This has shown to be potentially very effective in some studies. The recommended doses are not well established, try to find someone with experience. You can use either Class 3 (Low level) or Class 4 (high level) for this condition. Some articles:
I feel for him. I had shingles years ago (prior to CLL) and it was excruciating. Acupuncture helped with the post-heretic neuralgia, although your husband isn’t even at that point yet.
Hi Hartridge, I had shingles two years ago which started on my back and spread down to my left leg. It took around six months for me to regain full feeling in my leg. Although I have some nerve damage, I can manage it. During that time, I was feeling tired and lost my appetite, resulting in weight loss. However, as time passed, I got better and now I am back to my gym routine to strengthen my leg. I hope you recover soon. Best, Kenny.
I had classic case of shingles last spring. Doctor prescribed me gabapentin for nerve pain and a steroid cream. About 3 days after developing shingles, I started doing warm bath in tub of water with one cup of Epsom salts and one cup of backing soda. the bath treatment reduced the red eruptions from 1/4 to 3/8 inch diameter to about 1/8 inch diameter in about 1/2 hour. The singles eruptions were disappearing in one week and nerve pain gone in one month. I have a few small scars left and that is it. Blessings.
Hi, my sympathies to your husband. Shingles is no joke, I've had it 3 times.
Can you confirm you're in the UK and what stage of CLL is your husband; also your husband's daily dose of antiviral. My experience was that I was given too little Aciclovir and was taken off it too early first time around, then was misdiagnosed second and third time.
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