I’ve been diagnosed with oral shingles (and a big thank you to Bellabee for recognising the symptoms and making me go to the doctor).
I’m 6 days into aciclover and tegretol. I’m also using alcohol free mouth wash several times a day, but the pain is miserable. Paracetamol barely touches it and I’m so weak and wobbly and feel so poorly. Can’t get a telephone appointment with the doctor until tomorrow.
In remission after FCR just over 3 years ago
Any advice gratefully received.
Mandy
Hi Mandy. That is really miserable!
Who made the shingles diagnosis? I am assuming a Doc... and hopefully the Doc who you'll speak to tomorrow.
Have you been on Aciclovir regularly since FCR?
And what has your Lymphocyte count been like?
From my own experience Tegretol can take time to work. Other meds exist. Early treatment start is linked to quicker resolution. Hopefully when the lesions subside and heal so the pain will lessen and go.
Like you I am 3+ years post FCR, low L count and take Aciclovir daily.
Sending you best wishes.
Jig
I’m so sorry to hear this Mandy and just wanted to send you words of support. It’s really not good enough the GP’s continuing to refuse face to face appointments because some things absolutely must be seen.
Hope you can find some relief from the pain.
Best wishes,
Newdawn
So sorry to hear about the shingles, Mandy. Sounds awful... Did you manage to talk to the GP yesterday?
Thinking of you,
Paula
Thank you Paula. I did and I’ve been prescribed Amittiptyline, which will hopefully work better on the painful nerve endings. Just have to wait it out, I think. ☹️
Thanks for the update Mandy. (Sorry I didn't notice it till just now). I hope the Amitripyline will work for you...
Paula
That helped me. Xx
Hi Mandy, I can really sympathize with you, as I was Dx’d with oral shingles in ‘14!! I honestly thot I was going to lose my mind with the level of pain at the back of my throat!! 😫 Unfortunately, there was nothing strong enough for pain relief. By the time I was finally diagnosed, 3 wks had passed. I was very fortunate that once the pain began to subside, the nerve pain subsided as well. The docs had never heard of oral shingle's. I was undiagnosed with CLL, at that time, but it was already with me, since the end of 2011. I would not be dx’d until 2018. I had shingles again, on my scalp, 1 yr ago. I started Aciclovir rt. away, within hrs. It was a very mild case! 🙏🏻 I take Gabapentin for my Fibromyalgia, which I found was very helpful for the nerve pain! A lot of people dislike this med. immensely, but for me, it really helped with nerve pain. Several people I know have taken it for shingles nerve pain, and it has been extremely helpful! I wish You all the very best with your recover from this ungodly virus!! 🙏🏻
I’m due for my Shingles Vax at the end of this month, as I had to wait 1 yr. from initial onset!
Cindy
Thank you Cindy and I’m so sorry to hear of your suffering. Thank you for your advice on meds. I’ll mention that to my doctor if things don’t improve. Nerve pain is just the worst. Fortunately things are starting to improve 🤞
How long did it take for you to recover?
Mandy I survived mine ( apart from medication ) by not wearing a bra but a silk shirt next to the skin. Natural fibres are cooling and I found that helped with the irritation.
Colette
Thanks Colette. I have oral shingles. My teeth and face and horribly painful, but thankfully rest of the body ok!
Oh so sorry and I did wonder why you were using mouthwash.
Mandy just to throw a spanner in the works but have you been able to see anyone face to face for diagnosis yet because a few years ago my dentist discovered I had mouth thrush which was something I had never heard of, but easily treated with meds.
Colette
Hi, I had this too. Not a happy memory.
May I ask what dose of Aciclovir you are on, for how long, and who prescribed it? I ask because my own experience included errors in diagnosis and treatment of the condition.
Hi, thanks for your response. I am on aciclover, 800 mg, 5 times a day. It has been prescribed by the prescribing nurse at my doctor’s surgery. Also amitriptyline once a day. Then just paracetamol/cocodamol for the pain. 10 days on it is starting to retreat, but still painful. I have a few days left on aciclover and lots of amitriptyline. Really appreciate your help.
I think you're on the correct dose of Aciclovir. It should see off the mouth ulcers, but as you've probably been told, nerve pain can persist for months. That's what I experienced with shingles on the body, but not with oral shingles when the pain disappeared after a week or so.
Despite a previous episode of shingles my case of oral shingles was misdiagnosed, then I was under-prescribed and Aciclovir halted, whereupon surprise surprise the oral shingles returned!
Now I am on a maintenance dose of 800 mg per day indefinitely, and I believe every FCR-treated patient, or CLL patient with severe hypogammaglobulinaemia should be too.
Make sure you are eating high lysine foods/taking a lysine supplement while minimizing arginine. Herpesviruses thrive in high arginine environments, and lysine helps drive the virus back into the nerve roots by inhibiting replication.
pubmed.ncbi.nlm.nih.gov/626...
Lysine may also interfere with SARS-CoV2 plus influenza. I now take it year round. It may turn out that these amino acid ratios work for number of viruses, and why some people avoid infection when exposed to colds, flu, etc.
pubmed.ncbi.nlm.nih.gov/343...
For the mouth sores, in the US a chemist/pharmacist will mix viscous lidocaine, liquid diphenhydramine, and another agent into "Magic Mouthwash". This gives some immediate relief, it varies per person how long the pain is lessened. IDK if the UK makes anything like this. I have used it & think it works wonders, especially if you have lesions in your throat. I could mix 5ml of this in 15-30ml water in my mouth to swish, gargle, & spit out hourly if needed.
health.clevelandclinic.org/...
Thank you so much. That’s really interesting and informative. I don’t eat meat or much dairy, so I’ll up my soya and tofu and send for some supplements. I’ve been using various mouthwashes, but they don’t contain those ingredients, so I’ll speak to a pharmacist
Thanks very much.
No, no don't eat more soy, eat less! you want to Decrease arginine intake. Soy is higher in arginine than lysine. You want to eat foods that have less arginine than lysine if possible, with a lysine/arginine ration greater than 1 for now. I think miso, being fermented, has this ratio changed a bit but having trouble finding hard data. Maybe navy and green beans would be better for now. IMO since you don't eat much dairy, you will need a lysine supplement to help boost your levels. Dairy (as well as meat/fish) generally has higher ratios. Consider kefir or yoghurt temporarily? Until this gets under control? Maybe do an overall reassessment. I know I have to decrease nut consumption since diagnosis overall or break out.
vegfaqs.com/best-high-lysin...
The mouthwash is a prescription only mix in the US, not sure about the UK.
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