Aciclovir

[TheFlyer]

Hi All

I start Cycle 8 on Tuesday on V&O and its going well.

I have to take 3 x 200mg of Aciclovir a day, I get this sick type feeling about 2 hours later and usual passes but for a while I get stomach issues and have to go - Diarrhoea.

This then passes and all back to normal so it must be the Anti -viral anyone else experience this ?

just thinking perhaps there may be a different type or do you have to put up with it or stop taking them.

best to all

Jules

[mrsjsmith]

Jules when I was on Ibrutinib I took two a day, one in the morning and one at night. Might be worth questioning the amount and timing with your CNS.

Colette

[Kwenda in reply to mrsjsmith]

Agreed, this seems like a high dose compared to what I was taking.

Dick

[Ann1412]

Yes, this seems a high dose. I’m on one aciclovir morning and night too. I’m on cycle 7 of O&V. My daily reaction to “something I take” always comes 4 hours after my venetoclax tablets and lasts about 3 hours… diarrhoea is a known side effect of V, maybe it’s that rather than the aciclovir?

[Newdawn Administrator]

I’m actually on a higher prescribed dose of Aciclovir than that Jules at 2 x 400mg a day compared to your 600mg so maybe it’s not so unusual.

I do suffer with diarrhoea but hadn’t actually attributed it to those. There’s so many other possible culprits!

Having had the Shingrix vaccine, I am going to ask whether this level of dosage is necessary however. I’m on Zanubrutinib but interestingly I wasn’t prescribed Aciclovir whilst on Ibrutinib & Venetoclax.

Newdawn

[SEB0607 in reply to Newdawn]

Agree I am also on 2 x 400mg so it’s not a high dose, fortunately I have not had any side effects but we are all different. TheFlyer are you making sure you are drinking enough water?

[Newdawn Administrator]

Just checking dosage advice and found this helpful. It would appear that ‘preventative’ use of Aciclovir in immune compromised patients is usually 800 mg a day and diahorrea has been reported in 1 in 10 people.

medicines.org.uk/emc/produc...

Newdawn

[CLLquilt]

Hello TheFlyer - I had been on acyclovir while on acalabrutinib and I had the same symptoms. I have been taking ondasetron for nausea. Do you have anything for nausea?

My doctor recommended that I stop it for 2 weeks and my symptoms have gone away. I am going to call the doctor to determine if I really need to go back on it.

I feel your pain - that yucky feeling and the “make sure you know where the bathroom is”.

Good luck!

[scryer99]

Been on 400mg a day for quite some time. Some GI issues but manageable. Having had some viral illnesses while in treatment, though, I'll take the acyclovir every time over getting sick while on immunocompromising drugs.

[Bobby9toes]

I’ve been taking 400mg twice a day while on Calquence with no side effects at all. I’ve actually been on these for years for other reasons before the Calquence with no issues. Best of luck.

[bennevisplace]

Jules, if it's not the V/O, you may be one of the minority of patients experiencing that kind of reaction to Aciclovir. I've been on 2 x 400 mg/d for 5 years with no noticeable side effects and more importantly no recurrence of shingles.

You could ask your doc if it's OK to stop taking Aciclovir for a week, to check if it really is the culprit. If so, maybe switching to one of the similar antivirals, Valacyclovir or Famciclovir, would help?

cllsupport.org.uk/informati....

[TheFlyer]

Thanks Guys for the responses ,Consultant has said go down to two a day morning and evening and will see how it goes.

Jules

[rafew]

I had been on Acyclovir for years while on Venetclox and then continued with Acalabruitnib. There were ongoing digestive issues so we moved to Valcyclovir and it seems to have helped. Something to talk over with your doctor.