Shingles

[Guffy]

Hi peeps! Hope we're all doing well. Just a quick question for someone. My husband has just been diagnosed with shingles, poor man. He's already had the vac, so he's not feeling pain, just the itchy rash. Hopefully that stays the case. He's on antibiotics and we're applying cream (which I do with gloves on). I haven't been vaxed. I understand I can't contract shingles until the pustules burst. That's right, isn't it? Are there other things us immunocompromised need to be aware of with this disease? I'm w & w, 13q, unmutated. Thanks, guys! Peace!

[Panz]

You best get the vaccine!

Panz 🙏💕🙂👍

[Guffy in reply to Panz]

Gosh, that was quick! Yes, my GP is trying to get it for me. Over here, a GP needs the consent of the specialist. Thanks!👍

[AussieNeil Administrator]

Your poor husband should be prescribed an antiviral ASAP (typically valaciclovir), to hopefully quickly vanquish the shingles and prevent post herpetic neuralgia (PHN) from developing. If he develops PHN, then pregabalin generally works to reduce the pain - probably better than the other nerve pain drug gabapentin. Not much else works, unfortunately, though opiates might help - they barely touched the pain for me.

You are correct that it's only the fluid from the blisters which is infectious. You can't catch shingles from him, just chicken pox if you haven't had that or the vaccine earlier in life, or perhaps if you've lost immunity to chicken pox. If you are ever infected with chicken pox, that will put you at risk of shingles later on.

Chicken pox used to be so pervasive prior to childhood vaccination against that serious childhood illness, that you probably already have the varicella/herpes zoster virus present in you, waiting to make a painful appearance when your immunity drops too low to keep it from becoming an opportunistic infection. Get the Shingrix vaccination and booster ASAP! Please!!

Neil

[Guffy in reply to AussieNeil]

Thanks, Neil! A reliable and attentive mine of info as usual. Yes, he's on the antiviral (I said antibios when I should have said antivirals). I have had chicken pox, and my GP is sourcing a vax as we speak. All the best!

[mdsp7]

Hi Guffy! How difficult! I hope you stay well and that your husband is able to recover quickly with less pain and trauma than most. I pass along the following information based solely on my own positive experience with a herpes virus that had been plaguing me. Here is a link:

livestrong.com/article/2802...

In 2009 I was diagnosed with herpes and it was horrible. I was on acyclovir for a long time. Every time I seemed better and was able to discontinue the acyclovir, the lesions would return. When I took acyclovir, my spleen started to feel painful. I was really troubled.

I too am unmutated, 13q del, watch and wait. I finally looked around the internet in desperation, and found information about the herpes virus replicating more effectively with a high arginine low lysine amino acid profile. I looked up the foods that helped and in desperation added yogurt and hard cheeses (high lysine foods) to my diet, while eating far less of the nuts (high arginine foods) that I loved.

To my surprise and lasting gratitude, this worked for me. I have not needed acyclovir since. If I start to feel like I am moving into a state of herpes lesions, I am strict with the food choices. Otherwise, I just make sure to have some cheese or yogurt whenever I eat peanuts or other nuts.

I am not trying to minimize the seriousness of shingles. I hated the herpes experience and have had 2 doses of Shingrix. I have not tried the dietary fix with Shingles, but I pass it along to you as food for thought, and wish you and your husband all the best.

[Guffy in reply to mdsp7]

Hi, and thank you for your kind thoughts. I'm glad I've come across someone with the same mutation status (not glad for you, of course!) I haven't thought much about nutrition, but perhaps I should. I guess many of us kind of associate it with quackery, quite unjustly I know! I'm glad your diet's working for you. We must have a chat with the GP about foods that can increase resistance and minimize pain. Thank you! And take care.

[Trimark]

Hi Guffy,

I too am unmutated and am currently in my 12th week of Shingle. It has been very unpleasant so please extend my sympathy to you hubby. I hope he has a less unpleasant experience.

As Usual Aussie Neil seems to have nailed it with his comments. The only thing I would add is that ideally you need to get on Antivirals within 72 hrs of the rash appearing.

Also my cancer consultant has said I should continue to take Acyclovir for the next 6 Months.

Also great comments from MDSP, I’m just going to smother myself in Yogurt and eat hard cheese 🧀

[CLLerinOz Administrator Volunteer in reply to Trimark]

I’m sorry you’ve had a rough time with shingles.

There doesn’t seem to be consensus about post shingles prophylactic treatment for those with CLL.

Our pinned post about vaccinations includes a reference to another approach that appears in a brochure for GPs produced by Oxford University Hospitals in the UK. It recommends "If a [CLL] patient has a history of shingles, then they should still receive lifelong Aciclovir as secondary prophylaxis in addition to the Shingrix vaccine." nssg.oxford-haematology.org...

I hope it’s not long before you can start counting your shingles-free weeks.

[Guffy in reply to Trimark]

Thanks, Trimark! I am sorry for your pain, and hope it ends soon. I recommend a nice gouda🤗

[OWLS26]

Hi, I recommend you get the vax and do whatever you can to avoid shingles. I had shingles nearly 2 years ago and I have been suffering with the after effects ever since (PHN). It is very painful and debilidating despite being on 22 tablets a day for it.

[Guffy in reply to OWLS26]

Ouch. My heart goes out to you. Yes, my doc is seeing if he can get it for me. He needs the specialist's permission, and I can't imagine why he'd refuse.

[Doggoneit101]

Get the vaccination as soon as you can.

[Guffy in reply to Doggoneit101]

I will. Thanks.

[Big_Dee]

Hello Guffy

I just got over shingles Last month. Doctor gave me anti-viral but after three days I started taking baths with one cup baking soda and one cup Epsom salts in warm bath water. Within 1/2 hour of first bath, red patches around blisters reduced from 1/4" diameter to 1/8" or smaller. blister dried up in less than two weeks and nerve pain was gone in 4 weeks. I did take gabapentin for nerve pain but sporadically. I took soda/Epsom salt baths nightly for one month. I did not have any itching, maybe because the nerve pain was worse. 😁 Blessings.

[Guffy in reply to Big_Dee]

Thank you so much. I'll write that recipe down. Fortunately, hubby is not in pain yet. We think it's because he had the vac earlier this year. Sorry for your pain! Take care.