Hi everyone, I am on the Flair trial but have been off treatment for 18 months +. I have Shingles on my face and head and have been prescribed acyclovir over the phone which I am taking. The question is whether anything else can be done to speed recovery. On 11th April I am doing a fairly gruelling one week trip to Australia to visit my brother who lives on his own and has recently been diagnosed with MND. For various reasons, I must not delay this trip but it will involve 2 x 23 hour plane journeys within just over a week so I was already hoping I would survive this without any negative effect on my CLL and general health. Is there any magic immune system boosting drug I could ask for before this trip? I will speak to my trial nurse but wondered if anyone has any tips?
Shingles on face and head with CLL: Hi everyone... - CLL Support
Shingles on face and head with CLL
My heartfelt sympathies......I had it on my face, a few years ago. I wish I had a magic cure, but unfortunately, I don't. It lasted about 2 weeks, I think. Apart from the Acyclovir, I took paracetamol and ibuprofen which helped. I wish you well.
The plane trip to Aus' is a monster.....Good 🤞luck.
Thank you so much. Two weeks recovery time is encouraging!
I am very sorry to hear of your brother’s diagnosis. Hopefully you will feel better and can provide some much needed support to him.
Take L-lysine supplements (1gm 3 times a day) and cut back on high arginine foods.
Hydrocolloid dressings on my shingles helped - mine were on my face and neck. The dressing are available form pharmacies, and or Amazon/eBay. They are not cheap, and you need quite large ones, but I only needed to change every few days. They stop the itching, and hide the shingles a bit.
This doesn't stop you being contagious - shingles itself is not transmissible, but it will cause chicken pox in people who haven't had it.
I hope you feel better soon
Liz in UK
Thank you so much Liz. I'll get some of those. Good idea.
If you are in UK, I get mine from Boots.
Yes I am in UK and will do, thanks very much
So sorry to hear about your brother.
It’s good you started the aciclovir early!
I would say just rest like mad from now until you go. Shingles makes you feel shattered, and I’ve always found that mine gets better if I respect it and take it easy. Very likely that you will then be ok to fly. Before then, go to bed early, eat well, don’t drink alcohol, and take loads of rest.
I used to get loads of shingles before I was diagnosed, without knowing why!
If you start to get a lot of pain then see your Dr quickly.
All the best
Rest like mad, that's new LOL. Like do nothing as intensely as you can ☺️
Thank you. Yes it's probably the first time that I am taking the need to rest really seriously as I am so desperate to be well enough for the trip. Quite a lot of sharp pains still but I am seeing the doctor tomorrow and will ask if anything more effective than Ibuprofen. Eye starting to weep mysteriously today, like some one-sided crying although I don't think the shingles has "got into" the eyes.
Hello
Purchase some good n95 masks, drink lots of water and eat well. I put Vic up my nose before flight and when I blow my nose on the flight I reaply the Vic. This helps to trap nasties and it has worked for me for many years. I brought a neck wrap - head rest and sleep on the plan - at a time when I would normally sleep and if you need them - ear plugs and get nice and warm before you sleep. Take a good book and film to take your mind of the tough stuff. Take carexx
Were you prescribed an effective dose level of acyclovir?
What does are you on?
Worth reviewing this, as some GPs fail to recognise the difference of our CLL permanent immune dysfunction.. (warrants a higher dose)
I am on 800 mg tablets - 5 a day for 7 days. I am not sure if that is a high dose but I shall certainly ask the GP tomorrow when I see him as that seems a very good point. Thank you so much.
This is a standard Shingles dosing protocol, scroll down to the Shingles dosing section:
You might want to make sure you stay on a preventative maintenance daily dose of acyclovir or valacyclovir to start the day after your current prescription ends. -- at least for the duration of the trip, but some of us will be on life-long daily medication to suppress shingles outbreaks. Ask your CLL specialist about this as a CLL specialist would be most likely to know this.
Also, you will need fewer daily doses of valacyclovir than acyclovir, so it is a much nicer medication to be prescribed -- you can request this. According to Lewis et al., 2020, "A seven- to 10-day course of famciclovir (500 mg orally three times daily) or valacyclovir (1,000 mg orally three times daily) is more effective at resolving pain than acyclovir (800 mg five times daily).6" See: aao.org/eyenet/article/herp...
For your trip, if you are on the preventative dose of valacyclovir/Valtrex of 500mg twice per day, you should probably bring enough medication that your physician could prescribe in case of a flair to take the full 1000mg three-times-a-day dose. If it goes to your eyes, then valacyclovir/Valtrex 1000mg 3 times per day-- or even higher doses of 2000mg 3 times per day, has been described in the literature (Taylor et al., 2012 biomedcentral.com/1471-2415... )
This makes so much sense, I cannot thank you enough. I will be going to my doctor armed with this information and will push for being put on the preventative dose, preferably of the Valacyclovir if he will give me that, with the back up of going back onto the full dose if needed. I will feel much more secure if I set off on the trip armed with all that. Thank you again for such excellent advice.
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