Cold sores

[Hd07]

Hi looking for ABIT advice, my partner was diagnosed with CLL in 2016 he finished O&V treatment 2022 and all has been well with now 6 monthly review with his consultant. he's recently started to suffer from recurring coldsores and some joint pain that don't seem to be healing, he has no other previous symptoms that would suggest relapse, just wondered if anyone else suffers from these when blood counts are in normal range.Thanks

[LeoPa]

Hi what did the doctor suggest? Preventative antivirals maybe?

[RosettaClapp]

I do but I have always suffered from them in the winter months I am prescribed Acylovar am and pm in the winter months and that keeps them at bay 9on recommendation of haematologist )

[bennevisplace in reply to RosettaClapp]

I'd agree with you about the recurrent cold sores, which represent a reactivation of the dormant herpes simplex virus. They are an indication of immunosuppression, blood results notwithstanding, which a CD20 antibody such as Ob may cause for up to 2 years after treatment ends.

HD07's partner should report recurrent cold sores to his GP, who should prescribe an antiviral like Aciclovir. In the right dose, this should keep at bay both cold sores and the potentially more serious condition shingles, caused by reactivation of dormant varicella zoster, the chicken pox virus (another herpes virus).

[lankisterguy Volunteer]

Hi Hd07,

You have received excellent responses from   bennevisplace and   RosettaClapp , and I would only add a few details about the HHV family of viruses that plague many of us with CLL.

See: en.wikipedia.org/wiki/Herpe...

patient.info/doctor/herpes-...

and a deep dive into the science: ncbi.nlm.nih.gov/books/NBK8....

SNIP: "There are eight currently identified members of the herpesvirus family. They are ubiquitous and extremely well adapted pathogens. The name comes from the Greek 'herpein' - 'to creep', describing the chronic, latent or recurrent nature of infections.

Herpes simplex type I (HSV-1).

Herpes simplex type II (HSV-2).

Varicella-zoster virus (VZV/HHV-3).

Epstein-Barr virus (EBV/HHV-4).

Cytomegalovirus (CMV/HHV-5).

Herpesvirus type 6 (HBLV/HHV-6).

Herpesvirus type 7 (HHV-7).

Kaposi's sarcoma herpesvirus (KSHV/HHV-8)

++++++++++++++++++++++++

Herpes simplex virus types I and II (HSV-1 and HSV-2)[1]

Primary infection occurs through a break in the mucous membranes of the mouth or throat, via the eye or genitals or directly via minor abrasions in the skin.

Many individuals are infected with HSV-1 by 1-2 years of age;

HSV-2 infection tends to be with the onset of sexual activity.

Initial infection is usually asymptomatic, although there may be minor local vesicular lesions. Local multiplication is followed by viraemia and systemic infection and subsequent lifelong latent infection with periodic reactivation.

During primary infection, the virus enters peripheral sensory nerves and migrates along axons to sensory nerve ganglia in the CNS - hence managing to escape the host's immune response.

Between reactivations, the virus is truly latent - viral DNA is maintained as an episome (not integrated) with limited expression of specific virus genes required for the maintenance of latency. The delicate balance of latency may be upset by various disturbances - physical (eg, injury, ultraviolet light, hormones, menstruation) or psychological (eg, stress, emotional upset).

Reactivation of latent virus leads to recurrent disease - virus travels back down sensory nerves to surface of body and replicates, causing tissue damage:

-

Len

[Hd07 in reply to lankisterguy]

Thank you Len for all this information

[SERVrider]

Hd07, try Zovirax ointment. The active ingredient is Acyclovir.

[Hd07 in reply to SERVrider]

Already been using this ointment, thanks though going to speak to GP

[crazymazie]

I normally have at least 1 or 2 cold sores in my mouth...sometimes many more...my oncologist said there's really nothing to be done about them as I have cll. Recently, a friend gave me an elderberry gummy with zinc. The results were amazing! All my sores healed! I continue take the gummies when I feel sores coming and I've been pretty much sore free ever since!

[mrsjsmith]

Oregano oil is also a more natural remedy that works.

Colette