Shingles

[Thinkimjob]

I have had an attack of shingles on my thorax, treated with acyclovir. It started 2 weeks ago. The spots have all cleared, although the skin is quite tender still. But I feel really tired and unwell, which I wasn’t expecting 2 weeks on. I keep wondering if this is only the CLL or whether I should start looking for something else wrong. Have CLL on watch and wait.

[AdrianUK]

Are you still on the aciclovir? It may be worth staying on it discuss the benefits and risks wirh your doctor for your specific situation. Shingles can take ages to get over. It’s nasty. Or you might have another virus at same time. It can often come on when some thing else is there too.

[Thinkimjob in reply to AdrianUK]

Thankyou. No I have finished the acyclovir. I had hoped it was those that were making me feel poorly, but clearly not!

[AdrianUK in reply to Thinkimjob]

I take aciclovir constantly to prevent shingles. That’s not always the best option for everyone but it is something I am not the only one doing for sure.

[Cheshire2016 in reply to AdrianUK]

My husband is on this constantly during FCR, Will this medication be continued after FCR then and for how long?

[AdrianUK in reply to Cheshire2016]

That’s dependent on you and your doctors and whAt you agree doesn’t seem to be much consensus. Some say that you should stay on that and cotrimoxazole and maybe even azithromycin too for as long as your lymphocytes are below one (thousand) or as long as your CD4 or CD4/8 ratio is low or whatever. Some doctors don’t give any prophylactic meds at all even during treatment. There really needs to be a condensus statement in my view. But a lot depends of course on if you have side effects or not. And since I had shingles the first time about ten years before my diagnosis (when I was probably SLL or MBL but didn’t know it) and I have no side effects from it I’m not in any hurry to stop personally. I don’t know that I would personally respond to shingrex at rhe moment and it’s almost impossible to get in the uk even privately. At one point there was only one pharmacy giving it in the whole country!

[RSixtyThree in reply to Cheshire2016]

I was told to take acyclovir and Sulfatrim for 6 months after the end of FCR. I am in Canada.

[PJ60 in reply to Cheshire2016]

I started Valacyclovir two days before my FCR started cycle one. I was told I had to be on it for a minimum of one year even though my FCR will hopefully only take six months. I am happy to be taking the valaciclovir because I had shingles when I was 29 years old and I regularly get lesions on my lips. I’ve had no problems taking the valaciclovir and luckily it doesn’t seem to be bothering me. I also have to take an antibiotic, Sulfatrim for the full year as well.Good luck to everyone in these trying times.

PJ

[Graham64 in reply to AdrianUK]

Yes Adrian. I take Acyclovir every day as well.

[otonal in reply to AdrianUK]

I’m on Acyclovir too, started over a year ago after a suspicious rash. It looks like we may see the same medical team though.

[Jodi19 in reply to AdrianUK]

I have been on aciclovir for 3 years prophylactically. I began when I started treatment and have remained on since. Never had chicken pox as a kid so purely precautionary.

[BeckyLUSA]

It took me a good Six weeks to get over the worst of my Shingles and I had some off and on lingering nerve pain for another month or so. Hopefully you will start to feel better soon.

[Cottondove in reply to BeckyLUSA]

Yes I too have had a very painful attack of shingles and it took 10 weeks before the dreadful itching pain on my back receded. My haemotolgist has put me on permanent aciclovir. E45 itch relief cream helped a great deal.

[GMa27]

Give yourself time to rest/heal. Takes a lot out of ya. 💕

[cajunjeff]

Sorry about your shingles, I just got over a mild bout myself.

Your question as to whether this is just your cll is a bit confusing. I think I know what you are asking.

Shingles is a dormant virus we have leftover from the chicken pox we had as a child. Cll does not cause shingles, but rather by suppressing our immune system cll makes it easier for the shingles virus dormant in our body to activate. People with a compromised immune system for any reason are more prone to shingles. Just getting old makes us more vulnerable.

I agree with Adrian, you should discuss with your doctor whether it is wise just to stay on acyclovir indefinitely. I am taking it daily now because it has zero side effects for me and a full blown shingles outbreak can be very dangerous for us with cll. Its certainly worth a discussion with your doctor as is a discussion of whether you would benefit from having the shingrix vaccine.

[AdrianUK in reply to cajunjeff]

Completely agree about shingrex which is not live vs the older shingles vaccine which is. Shringex is very hard to get anywhere outside the USA and may or may not work for those of us wirh more damaged immune systems but certainly vaccines can work for us especially early in our CLL (I still have antibodies floating around from a pneumonia vaccine I had in 2017 just after diagnosis) and the shingrex vaccine has shown efficacy in people wirh damaged immune systems caused by other conditions.

[Singist]

I had shingles in my eye and across my head earlier this year. I too expected it to go after a couple of weeks but am still feeling the after effects now. As others have said a weakened immune system leaves you prone to shingles if you have had chickenpox at any point in your life. Shingles can be quite debilitating and the feeling of being unwell the tiredness are most likely due to this. My doctor prescribed Pregabalin for the resulting nerve pain and I am expecting to be taking this for a while longer. Your best course of action is to speak to your doctor. Wish you better 💕💕

[mehall51]

Post FCR I am on acyclovir for life as a preventative to viral infections. Have been taking for 5 years 3 times daily. Seemingly no ill effects.

[bennevisplace]

After my experience with shingles, 3 times on W&W, I'd make sure my GP, dentist and haematologist were all aware of the condition, and really it should be haemo's call as to whether you need to be on Aciclovir full time.

Dentist? I hear you say. Yes, plus oral surgeon, because my second and third attacks of shingles produced mouth and sores, unusual and not recognised until lasting damage to gums had been done. Lesions and faint nerve pain from the first attack persisted for best part of a year.

As others have said, a lowered immune system leaves you vulnerable to getting recurrent shingles. Aciclovir will keep it at bay, and I don't know of any common risk of taking it long term, check that with the doc.

[Quarry]

Shingles can take time to go. Aciclovir works miracles on the Shingles, but I do remember shooting pains in head for some weeks - they eventually went.

Ilike others above, I am also on Aciclovir for life - I can't remember that is because I had Shingles (and CLL) or because I had Shingles AND no spleen (and CLL). Worth checking with your specialist (not GP) what is best.

[Gsxjax]

I remained exhausted when I had shingles (pre CLL diagnosis)

I was told that this was to be expected. It took about a month to get over it

[Fran57]

Hello. Sorry to hear about the shingles.

My husband ( who is the one with CLL) had shingles and said it was the worst pain ever! After a while, his consultant said he could possibly stop taking the Aciclovir, but was happy for him to continue indefinitely, so he takes it every day, because he definitely does not want to experience that again.

I hope you feel better soon.

Stay safe,

Fran 😉

[-Sparky-]

I have CLL, have had Rit/Benda for 6 months ending in Jan 2019. WBC are mutated and I receive immunoglobulin every 4 wks since Mar 2019. Last year I had the shingrix vaccine. Since May, I have had sores on my tongue and it is now August. I had 10-days of valACYclovir in May but it did not help. Could I have shingles? Could a longer dose of valACYclovir be beneficial? My hematolgist said to see my GP which I did, then I saw an oral surgeon and no one seems to have any thoughts. Any thoughts would be appreciated.

[bennevisplace in reply to -Sparky-]

If you have shingles (herpes zoster) or cold sores (herpes simplex) then 10 days of Aciclovir 2 X 400 mg / day should have seen it off. My oral surgeon thought either of these are rare to see in the mouth and missed the diagnosis, which needed a biopsy. Even then it didn't distinguish between those two viruses. Shingles seemed more likely as I'd had it on my head and trunk some months before.

Mouth sores can be pretty uncomfortable. Mine were on inner cheek and gums. I hope you find a solution soon.

[-Sparky-]

thanks for your reply