Side Effects of Long Term use of acyclovir when on Ibrutinib+venetoclax

[Mansy]

I am new to this site and hello to all of my CLL comrades.

I am on a clinical trial of ibrutinib (for two months) and then adding venetoclax until I achieve MRD negative. I started ibrutinib 3 weeks ago and so far doing fine, except some minor side effects. Now, my CLL specialist wants me to start acyclovir (400 mg) for several months (or a long time) until my blood numbers reach normal. You see, I had a bad case of shingles 4 years ago (after my FR) and she is afraid of recurrence. I googled "side effects of long term use of acyclovir" and some scary stuff came up. Has anyone of my fellow ibrutinib users been on acyclovir for several months and what has been your experience?

[BeckyLUSA]

Welcome to this wonderful site. We have a wealth of information and great people here. I know you will benefit as I have. I too am on a trial and have been on acyclovir sine August. No side effects so far, but Will be following this post.

BeckyL USA

[Mansy in reply to BeckyLUSA]

Thanks Becky!

[debs24]

Hi

I've been taking Aciclovir since I started taking Ibrutinib, around 9 months ago - no side effects or problems at all....fingers crossed it stays that way!

Good luck and best wishes

Debs 🙂

[Mansy in reply to debs24]

Cheers!

[thb4747]

Hi, I’ve been on acyclovir for several years now without any issues. Cheers, Rob

[Mansy in reply to thb4747]

Several years???? Wow... Good to know, thanks.

[thb4747 in reply to Mansy]

Actually, I checked my health records and I started (this time) in December 2012. I was on it earlier too for a couple of years.

[Louie_CC]

I’ve been on Acyclovir since starting Ibrutinib in Jan 2017. Venetoclax was added in July 2017. MRD achieved in February 2018! No side effects along the way. 😀👍

[Mansy]

I am soooooo happy for you... You just raised my hope and will walk this path with more confidence. Thanks.

[lankisterguy Volunteer]

I have been on Acyclovir since 2012, and had no problems or side effects- I have no desire to risk getting shingles. (I did have gastro problems on Valacyclovir- Valtrex a similar drug)

Len

[Mansy in reply to lankisterguy]

Yes, I know what shingles can do... I had a bad case 4 years ago, right after my FR therapy.

[Ladydi49]

Hello Mr a him I

I had shingles in 2008 a year after I was diagnosed and was put on acyclovir immediately so my outbreak wasn't too bad. My hematologist up north told me at that first visit in '07 that I probably had cll for 1 to 2 years...still on w&w but feel I'm inching closer to treatment which scares me because once I start my doctor said I will have to be on them for life. Ask your doctor about taking g a good quality probiotic as antibiotics can wreak havoc with one's stomach.

Best Regards,

Dianne Trisomy 12 and unmutated

[Mansy in reply to Ladydi49]

Dianne, I had a bad case of shingles in 2014 and was on acyclovir IV injections, so I know how terrible it could be. Regarding ibrutinib for life, I have just started ibrutinib for three weeks. Like you, I was scared before taking it, but now, I am less scarred because I have only minor symptoms: low level joint pain which goes away without pain killer, red spots on my tongue and arms (will show to my specialist on Thursday), minor headache one hour after taking the pill which goes away in a couple of hours. MR

[Loritab]

I've taken valcyclovir long-term twice--first time was during Che mo in 2009. After discontinuing the valcyclovir a year later I got a horrible case of shingles in places no one should ever ever have shingles. After my cll began progressing again in 2016 and I was admitted to the ibrutinib/venetoclax clinical trial. My future appears to have valcyclovir in it for quite a while. Of my meds, its the easiest one to take.

[Mansy in reply to Loritab]

After the first chemo, do you believe that you got shingles because you stopped taking valacyclovir after a year?

[country76]

What kind of scary stuff?? I have been on Acyclovir for 3 months re Shingles protection. My pharmacist explained to me when a virus enters your body the Acyclovir surrounds the virus and it can not go anywhere. I haven't had any problems so far.

[Catnap7]

Hi I’ve been on Acyclovir to help with the mouth sores that Ibrutinib dishes out for me I’m on Venetoclax also till my trial is over in Nov 2020. I reached MRD in Jan this year

Have never had side effects from Acyclovir

It has only helped me fight mouth sores

[Oleboyredw-uk]

I was on Acyclocir for 18 months in 2012/2013 when I had FCR. no problems with it, consultant decided it was no longer necessary.

I had Ibrutinib + Venetoclax in 2017/2018 on CLARITY trial for 14 months. In March 2019 I got Shingles (quite mild compared with what I’ve read of others), so the put me on Acyclovir as a prophylactic to stop reoccurrence. I’m still in it today 14 months later.

No side effects to best of my knowledge.

best to all, rob