Prophylaxis While on Ibrutinib

[Davidcara]

Just one more question: Wondering if anyone is on any antiviral, antibacterial, or antifungal medication, while taking ibrutinib.

[cajunjeff]

I am on ibrutinib and take vacyclovir to prevent shingles. I had shingrix vaccine and had quit vacyclovir. I had a very mild case of shingles and got back on vacyclovir. I am not sure if shingrix didn’t work at all for me or worked enough to keep my shingles episode a mild one.

Vacyclovir creates no side effects for me of which I am aware so I’ll probably stay on it indefinitely. Given how devastating a serious shingles event can be, I think taking vacyclovir while on ibrutinib is wise, of course with doctors advice.

[Davidcara in reply to cajunjeff]

Do you take a reduced dose of Valacyclovir? Thanks Jeff

[cajunjeff in reply to Davidcara]

I was taking one a day prophylactically. Now I am on three a day because I have an active, but quite small, patch of shingles on my chest that stubbornly will not go away. Once it does go away I’ll drop back to one a day.

[Davidcara in reply to cajunjeff]

Oh ok, thanks Jeff. Appreciate the information

[HopeME in reply to cajunjeff]

Hi Jeff:

Did you know right away it was shingles or did it take some time to identify the problem? I am uncertain what a mild case means. I stopped taking anti-virals per my doctor’s instructions after I received both Shingrex shots so I read with interest that you were hit with shingles after getting the Shingrex vaccination.

Thanks,

Mark

[denmanjemima in reply to cajunjeff]

I had shingles just before starting ibrutinib. I wonder how long we are immune to a repeat. Thanks for the tip. I will mention it on my next phone call with my oncologist. (Great option during COVID crisis)

[annmcgowan]

Hi the only prophylactic I take is cotramazole x2 Monday, Wednesday and Friday. I have asked about antiviral prophylactics and advised I don’t need them as I have not shown any signs of shingles.

Ann

[WarriorPrincess4 in reply to annmcgowan]

Hi Ann, just a question. Do you experience any side effects from the cotramazole?

[annmcgowan in reply to WarriorPrincess4]

Hi no I don’t have any side effects.

Ann

[WarriorPrincess4 in reply to annmcgowan]

Thst's encouraging 😃 Thanks Ann.

Ellen

[annmcgowan in reply to WarriorPrincess4]

Good luck.

Ann

[BeckyLUSA]

I take acyclovir twice daily while on Ibrutinib. I had shingles the year before I was diagnosed with CLL. I had received the original shingles vaccine when I turned 60. My CLL specialist thinks my immune system had already been compromised when I got the original shingles shot, so therefore did not work well for me. Also, the original shingles shot had a low effectIve rate anyway. Shingrix is supposedly much more effective. My specialist however does not want me to get it at this time.

BeckyL USA

[Justasheet1 in reply to BeckyLUSA]

Becky,

I used to take acyclovir when I had BR five years ago. Since going to MDA, I began on ibrutinib with valacyclovir one pill daily.

I received the Shingrix shots about a two years before starting the ibrutinib without issues other than the usual symptoms.

Dr Wierda still prescribed the valacyclovir because he said, “How do we know it works?”

As for antibiotics prophylactically; nope.

Jeff

[CoBubby]

I take one 500 mg Valtrex. I had the shingles shot at 60. Several years later, I thought I had a spider bite and luckily happened to have a body check that day. It was the start of shingles. I was going to get the Shindrix shot, but waited. Then my current specialist didn’t recommend it (as had my previous doctor). He had several CLL hospitalized, and at my recent visit was told that several had occurrences of shingles even after getting it! It’s been easy to just be preventative.

[W00dfin]

My oncologist has had me taking valacyclovir since my FCR in 2011.

[Nicebaps]

I take aciclovir, co-trimoxazole, azithromycin.

[SandandWind]

I take acyclovir twice a day and sulfamethoxazole/trimethoprim three times a week.

[KrisBren01]

Hi there, I take Aciclovir twice a day and Co-Trimoxazole once a day along with 3 Ibrutinib .

[Davidcara]

Wow it looks like a lot of different thoughts on this. When I first started ibrutinib, I was told prophylaxis was not needed. I have just been wondering. I do see different literature recommends Shingrix but, have not seen anything on antibacterial or antifungal. Thanks Everyone

[Justasheet1 in reply to Davidcara]

David,

During chemo, I was prescribed acyclovir and Bactrum throughout and for a few months afterwards and then told that I could stop.

Dr Wierda started me on valacyclovir daily with the ibrutinib but chose against an antibiotic prophylactically for whatever his reasoning is.

Jeff

[ViPOR]

I was on Valtrex (ValCyclovir) for antiviral, 500mg twice a day. I did not start my IVIG infusions until after I got my CAR T which was after my Ibrutinib clinical trial for Follicular NHL. Even though I had been on the Valtrex, I got the shingles anyway. I had gotten the LIVE Shingles vaccine about 2 YEARS before I was diagnosed with my FNHL. \

[WarriorPrincess4]

I am on Zanubrutinib. Six months into treatment I got shingles and was then put on Valacyclovir and am still taking 500mg a day and probably will be for as long as I'm in treatment.

A month ago my Dr. recomended I start on Cotrimoxazole, one pill every Monday, Wednesday and Friday. I got the prescription then after reading the side effects I decided to wait awhile before taking them. I am still not convinced that I really need them. I am seldom sick and have never had bronchites or pneumonia.

[Davidcara in reply to WarriorPrincess4]

Just curious, I know it is to help prevent pneumonia but, why did Dr think you were at risk for it. I used to work in Transplant. We gave a lot of bactrim to our patients ( cannot be allergic to sulfa). The problem we would sometimes see was neutropenia. We would give one tab Mon thru Fri. None on Sat and Sun. Sometimes the patient white count would be wiped out on Monday. So we changed to one tab every Mon Wed and Fri and that fixed that problem

[WarriorPrincess4 in reply to Davidcara]

To be honest I don't know. He decided to prescribe it just before the end of my appointment. He knows I dislike any extra medication so he kind of snuk it in on me. That's part of the reason I haven't started with it yet. I am going to ask him on my next appointment Dec.10th. My Ig's are very low, maybe this is a reason. I'll find out.

[country76]

I take an antiviral, acyclovir to help prevent shingles.

[DelrayDave]

I am on ibrutinib 5 plus years. I have had courses of antibiotics for various infections (cellulitis, pneumonia, toe infection, bronchitis, sinusitis). But nothing prophylactic. I keep a zpack (azythromycin) in case I need it. I get IVIG every 4 weeks and that has ended most problems. I do put bactroban on any open sores to prevent infection. I think it's been well over a year, maybe 2, since I have needed oral antibiotics. I have not had any antivirals.

David

[Davidcara in reply to DelrayDave]

Thanks Dave and Princess. I’m on antibiotics now for skin infection and abscess. Was looking like viral infection for a little bit, but negative for that. This is what got me thinking about prophylaxis again. Went I started ibrutinib MD said not needed. Just a little paranoid, I guess. Plus seems strange if the bar is getting infected first. My labs are actually ok. Thanks for the comments

[denmanjemima in reply to DelrayDave]

Trooper you be! Great to hear how you've managed over the years. I'm just starting.

[zaax]

Vacyclovir is not just for shingles you must keep taking an antiviral, whilst your on Ibrutinib. I'm on Co-Trimoxazole

[Davidcara in reply to zaax]

My understanding is Valacyclovir is an anti-viral and Cotrimoxazole is a antibacterial

[morepork]

Well I'm not on ANYTHING prophylactic. Ibrutinib since late 2016. 😊

[Davidcara in reply to morepork]

Thanks morepork. The way my MD explained when I started ibrutinib 7 months ago, not needed if you are not high risk. I did not ask what determines high risk. Thinking about it now, I would think maybe previous viral infections, or a history or pneumonia or lung disease???

[morepork]

You are probably right re the previous history factor. My haematologist has the same approach as your GP, although what is also clear since I joined HU's CLL group is that there are marked differences between different countries' practices in terms of preventative drugs for those with CLL. And also how to define "high risk". And also each person's CLL profile (one size doesn't fit all) and what their haematologist prefers. And whether you are in a system like the NHS as we are. As someone with a 17p deletion and low IG's that would be "high risk " I imagine, but I don't personally feel at high risk at present, after 20+ years of living with my rogue B cells . 😊

[Davidcara in reply to morepork]

Wow 20 years ! I was diagnosed in July 2019. California USA

[Penkman]

I take 2 X 480mg Co-Trimoxazole anti-biotic tablets on Monday, Wednesday and Friday each week.

This is to help prevent chest infections from a pre-existing lung condition called bronchiectasis.

Prior to taking them I developed two chest infections resulting in hospital admissions on each occasion.

Since taking them, I have had no further problems or side effects.