Hi everybody,
I’m currently 2 months into O + V treatment; it’s going well, no side effects, bloodwork good. My doctor said I’m not at high risk, but he’ll prescribe me Valtrex as an anti-viral prophylaxis, twice a day, if I want him too. He’s okay either way.
Hmm. Well, do I want him to? I dunno! I like to minimize my meds as much as possible. Anyone take it? Worthwhile? Any side effects? Advice?
Thanks, —Dave!
I have taken the generic form for almost a year now. No side effects I am aware of.
I think it is worth it to try to avoid shingles. This forum has exposed me to how deadly it can be for us.
Thanks for the reassurance, DriedSeaweed (lol). But when/why would one *stop* taking it?
Work out with your specialist when it is safe to stop taking Valtrex. That would most likely be when you have successfully responded to a Shingrix vaccination or when you have healthy lymphocyte counts, e.g. when you are off treatment. Antivirals seem to be preferred over vaccinations in those with CLL.
Neil
Very helpful, sir. I was wondering about Valtrex vs. vaccination. You addressed it before I could ask.
I did shingrix before I was started on valacyclovir.
Each person and doctor is different so suggestions probably all over the place. My local hem/onc never mentioned taking valtrex or noxafil but NIH thought my case warrented it.
Did not mean to scare you but it seems like an infection such as shingles can lead to serious complications.
Just don't mix up the blue pills now! 😧
My husband has been taking it twice daily since 2016 to prevent shingles.
The primary benefit is dramatically reducing the chance of Shingles (or other Herpes family viruses ) outbreaks.
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If you have had the two Shingrix vaccine injections this might not be as urgent.
Here is a recent dialog on CLLSLL@groups.io
Date: Tue, 24 Mar 2020 11:07:27 EDT
Is there any worth in taking antiviral medication, for example acyclovir, to help prevent viruses like Covid-19 from taking hold?
From: Rick Furman
Date: Tue, 24 Mar 2020 12:37:17 EDT
Acyclovir, valacyclovir (Valtrex) , famciclovir, and IVIG will have no direct effect on COVID-19.
when are antivirals indicated for use on an ongoing basis in the CLL population? I understand they are useful as protection against Shingles, but do they protect against other viruses as well, for example colds and the flu? I am thinking not because otherwise they would be in more widespread use, but am curious about why they would work only against some viruses and not others.
Date: Tue, 24 Mar 2020 13:45:00 EDT
I’m sure Dr Furman has much more accurate answer but the Herpes class shingles etc are large encapsulated double stranded DNA viruses. Quite different in function and makeup than CoronaViruses which are I believe much smaller and RNA viruses so the action and method for reproduction is very different and so the antivirals work by quite different mechanisms. The same antivirals won’t work on RNA viruses like CoronaVirus
1g. Re: Antivirals
From: Rick Furman
Date: Tue, 24 Mar 2020 13:52:20 EDT
Acyclovir, valacyclovir, and famciclovir are specific to herpes simplex and herpes zoster (shingles).
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Len
Hi. I am in a clinical trial and I take acalabrutinib and venetoclax. When I started the ramp up for venetoclax in November, I had four cold sores in one month. So, my doctor suggested I take valtrex once a day. So far so good. No side effects from the valtrex and no new cold sores.
Cindy
my experience w Valtrex was" it caused severe neutopenia. not a good time to have that!
When my wife was hospitalized for 9 days following a CAR-T infusion, she was given 800 mg Valtrex or eq twice a day. After discharge she was on 1000 mg Valtrex once a day for several months, then it was reduced to 500 mg daily. She continues to take Valtrex 500 mg daily. She has not had any side effects.
Hi DRM18, I’ve been on Valtrex daily for almost 10 years for a condition unrelated to CLL and will continue to do so for life. While I also hate taking pills, I have to say I’ve had absolutely no side effects and it keeps me from having outbreaks unless i’m under unusual stress, in which case I double the dose for a few days which takes care of the problem. I have no information as to its efficacy for someone on V +O as I’m still W+W.
Been taking 1 pill for almost 4 years which started with my O + I + V trial. I am lucky to have Dr. Byrd as my doctor, and I don't question his treatment plan which includes this. I've been there several times since the vaccine was available, and having that as a substitute hasn't come up.
I'm taking it but only once daily. No side effects that I'm aware of. I've been told, however that it will not protect you against Covid 19
I did O and am presently on V. I take Valtrex twice daily with no problem. I was like you about taking meds but my specialist really thought it was a good idea. I’m happy with it and also wonder if it might be helping keep COVID-19 away. Good luck to you
I started Valtrex when I began Imbruvica. Early on I began having liver issues which we thought were related to the Imbruvica and eventually moved it down to one capsule (140) every other day. I still had success at lowering my WBC at that dose. But my ALT and AST were still rising. We decided that it may be the Valtrex instead. I stopped taking the Valtrex and like clock work those numbers came down over a couple of weeks to normal. I decided not to take anything for shingles and wait for the new non-live vaccine. I took both shots when they became available for me in our area and have done well since then. My Dr. told me that 2-3% of Valtrex patients will have liver issues and I must have been in that 2-3%. So just keep and eye on your liver numbers in case you are also in that group. Wishing you well.
Sue
My wife started O+V around Nov 1 2019. She completed the two doses of shingrix prior to treatment initiation. Concomitant to the initiation of treatment, she was started on acyclovir (twice a day) and bactrim (sulpha) three times a week. In addition, she takes entecavir everyday (she had hepatitis B as a child, and there is the riks of viral reactivation with obinutuzumab)
The only issues have been thrombocytopenia (presumably an autoimmune reaction to obinutuzumab) and neutropenia (presumably Venetoclax). She was given platelet transfusions in 3-4 instances, and GCSF injections twice. Last obinutuzumab infusion will be early May. Her neutrophils flounder between 1000-2000 (mild neutropenia) and her platelets got as low as 15 after the first O infusion. Her numbers have gradually recovered and she is now at 70-100. There is a drop after each O infusion, so her IgG infusions are administered the day before or the same day that O is infused. IgG helps with platelet numbers. The expectations is that platelet count will return to normal levels once she gets done with the O infusions (next month!)
She has tolerated all the meds very well, no gastro-intestinal issues at all, no headaches, etc. Statistically, neutropenias and thrombocytopenias developed during V+O tend to dissipate after 6-9 months.
Importantly, she has had what I think is a "complete response". No UMRD tests yet.
However, we are all different!
Cheers.
I’ve been on Valaciclovir for over 10 years. No side effects that I’m aware of!
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