6 months on ibrutinib

[antonb]

Hello 6 month on Ibrutinib .

Good results (WCC is 9800 from 350.000 at the peack ,all other labs improving )

Very few side effects although ...my BP is raising from 11/7 to 13/7 in the last 2 month s and some days 14 ( although i have had a rough week at work which could influence it

I am also on Aciclovir as long i take ibrutinib ...i asked my Dr if i would stop Aciclovir but she told me no. I wonder is everyone has the same indication.

I can´t complain Ibrutinib has done it´s job.... just want to hear from other users about these issues,

Thanks to all

[Hidden]

I take ibrutinib but not acyclovir. some doctors give preventative anti virals or antibiotic,some don't. I take nothing. Ibrutinib can raise BP in some people. It's in the literature.

[PlanetaryKim]

Congrats on your good results, anton! I don't take aciclovir with my ibrutnib, so I don't have any information there. But from reading this board, I would say most people on ibrutnib do not seem to also be permanently on an antiviral like aciclovir.

[KatieBlue]

I was given acyclovir to take with ibrutinib.

I was told by the pharmacy team as an afterthought when going over possible side effects before starting the ibrutinib.

They came back to my clinic appt room to tell me, “Oh, by the way, you’ll be taking acyclovir twice a day for the entire time you are on ibrutinib, as well as an acid reducer. “

[PlanetaryKim in reply to KatieBlue]

interesting.

[Redlion in reply to KatieBlue]

I was on an acid reducer for a couple of years prior to starting on Ibrutinib and was concerned that the acid symptoms would ramp up, I was right and now I have graduated to a PPI from Ranatidine. The PPI is much more effective than the Ranatidine was so happy with the outcome but a little concerned about the long term consequences.

[KatieBlue in reply to Redlion]

I’m not familiar with “PPI”... but I’m glad it’s helping.

And, yeah, the long term effects of all of the stuff is a concern 😳🙂

[Redlion in reply to KatieBlue]

Thanks

PPI - proton pump inhibitor, such as omeprazole, esomeprazole, lansaprole.

Cheers.

[KatieBlue in reply to Redlion]

Thank you, Redlion. Appreciate them explanation. 💕

[1935husband in reply to Redlion]

I’m also on PPI with IB, so far very pleased after 4 Months.

Had a lot of heartburn until I restarted OTC version when prescription strength ran out.

[antonb in reply to 1935husband]

My Dr doesn´t want PPI´s as Alkaline stomach might interfere with absorption . I use Ranitidine when neccesary .....

[Redlion in reply to antonb]

If Ranatidine is working for you that is probably better than moving to a PPI as it is my understanding that there is a slightly higher risk profile attached to PPI's. But for anyone who has experienced the extremely unpleasant and painful symptoms of acid reflux and acute indigestion will know that it cant be ignored and if only a PPI deals with it then it becomes the obvious and perhaps the only treatment. My haematologist had no problems with me taking it but there are those who disagree who claim it reduces the effectiveness of the Ibrutinib treatment by interfering with the absorption of the drug. I am not sure if this objection is based on anymore than a theoretical risk as there have been some "limited" studies which indicate that Ibrutinib binding rates are virtually unaffected when dosage is reduced. My last blood test check (last week) showed a further decline of WBC over the last 2 months from 10.5k to 8.5k which demonstrates that despite taking PPI's Ibrutinib is still doing it's thing.

[cllady01 Former Volunteer]

Herpes Zoster (shingles) can be a very nasty and dangerous thing to experience. When in treatment, your immune system is more vulnerable on all sides, so, taking the Acyclivir is, to my mind, a good thing. Better safe than sorry.

[cajunjeff]

That sounds great Anton. Ibrutinib is doing its work.

I have been on it a year and am now on high blood pressure meds, but so that’s an unfortunate but manageable side effect.

I took acyclovir until a couple months ago with no problems. I just finished my second shingrix vaccination for shingles, so I don’t need to take acyclovir anymore.

[Jm954 Administrator]

The Ibrutinib is working it's magic Anton and I also take Acyclovir twice a day as a prevention against shingles. I see it as important as the ibrutinib as I dread the thought of shingles and painful post herpetic neuralgia.

Like cajunjeff I developed high blood pressure and mine is also easily controlled on medication, there are plenty that don't interact with Ibrutinib. Please keep your eye on your BP, mine was 240/74 before I realised I had hypertension and I felt quite ill in a non specific way.

Take care

Jackie

[Twas]

Perhaps your neutrophils are low and you are neutropenic so low immunities are causing concern for infection. I had to take valcyclovir while on frc but not since the neupogen shots raised my neutrophils and I switched to Ibrutinib. When it comes to shingles JUST SAY NO! Best of luck to you 😘 Lisa

[antonb in reply to Twas]

my neutrophiles has been raising from13 % in march to 20 % in april and i have had no infections , except a normal and very mild cold . thanks Lisa ! i am aware of shingles.... just wonder if everybody was on it

[AussieNeil Partner Administrator in reply to antonb]

Please don't make the mistake of using your percentage of neutrophils to determine your degree of immunity. It's like a small country thinking it can beat a super power because it has a higher percentage of its armed services on active duty. You need to look at the absolute number of neutrophils (i.e. fighting troups).

Because presumably your White Cell Count is reducing due to Ibrutinib reducing your lymphocyte count, the percentage of other white cells has to rise - simply because the total of all the individual white cell type percentages must total 100%. However it is quite possible that your absolute neutrophil count can fall - even dramatically, while the percentage of neutrophils can increase. That can easily happen when there is a large reduction in your lymphocytes due to CLL cells being killed off.

Great to hear you are doing okay infection wise.

Neil

[Benny12]

Glad to hear it’s working for you. I hope it does for me too.

I’ve only been on it for one week & I have my first blood test today. & every week for the next 3.

I’ve also been prescribed aciclovir as long as I’m on Ibrutinib. When I queried it, as I believe the shingles risk is quite low, I was told I will be prescribed it but they can’t watch me to see if I take it!

Good luck.

Benny

[Redlion]

I am 10 months in to my Ibrutinib treatment and 2 months ago a random BP test showed a 132/86 (up from 108/76) last week it was 125/81. Obviously I cant say the rise is connected with taking Ibrutinib but there does seem to be quite a number reporting this so it may well be. I will be keeping a closer track of my BP going forward. Male 64 year old although when I look in the mirror I think I look more like 30, think I may need to go to specsavers.

[retired46]

Hi there,

Ive been on Ibrutinib for 3 months with good results and have to take an anti biotic as well - co-trimoxazole 2 tablets 3 times a week, I asked my consultant about stopping cotrimoxazole and he said no, I have to take both - which is fine , hoping for continuous good results for everyone.

Have a good day.