Eventful First Week on Ibrutinib

[Coldplaybest]

After numerous false starts the Consultant started me on Ibrutinib a week ago. My treatmentincluded several other protective medications. All was well for the first 3 days but I became very sick suddenly with extreme vertigo on Sunday (day 5) after taking a weekend only prescription of an antibiotic called co-trimoxazole. After a trip to A and E and two days in hospital the doctors concluded that the antibiotic was the culprit and removed it from my treatment. I am now home, feeling better but anxious and in Day 10 of my treatment with no further dramas. I wonder of anyone else has experienced this? I would be very interested. Unfortunately this incident has caused me to lose a lot of weight which I will have to put on again somehow.

[Skyshark]

Co-trimoxazole "weekend only", I've not heard of that.

I've seen protocols for 960mg every other week day, Monday, Wednesday and Friday.

I had 480mg every day.

What dose was "weekend only"?

A lower dose more often may be better.

[Coldplaybest in reply to Skyshark]

Thankyou so much for your replies. I've just checked my co trimoxazole prescription. It required me to take 960mg twice a day for the two weekend days only. By the time I was sick I had taken 6 tablets each containing 480mg in a 26 hour period. Perhaps I was prescribed too much in too short a period? I need to discuss this further with my doctorMy weight loss, I'm sure was for being excessively sick after taking the dose. I'm sure it will return bit by bit. I'm eating plenty of weight gaining food now.

Again, Many thanks for the interesting replies. John

[Skyshark in reply to Coldplaybest]

960mg twice daily on adjacent days is for an active infection but is taken for longer than a weekend.

bnf.nice.org.uk/drugs/co-tr...

Prophylaxis of Pneumocystis jirovecii (Pneumocystis carinii) infections for co-trimoxazole

By mouth

[snip]

Adult

960 mg once daily, reduced if not tolerated to 480 mg once daily, alternatively 960 mg once daily on alternate days, alternate day dose to be given 3 times weekly, alternatively 960 mg twice a day on alternate days, alternate day dose to be given 3 times weekly.

What cancer alliance is your hospital in? I'll see if I can find a protocol. The ones I've seen so far had lowest doses underlined above.

england.nhs.uk/cancer/cance...

[PaulaS Volunteer]

Hello Coldplaybest,

I’m sorry to hear about your reaction to Co-trimoxazole. I too was prescribed that drug with Ibrutinib, though I was instructed to take it on Mondays, Wednesdays and Fridays (like Skyshark suggested). I can't remember the exact doses I had now, as it was many years ago.

Soon after starting the Co-trimoxazole (which was several months after I'd started Ibrutinib) I started getting nasty rashes on my face. My haematologist asked a dermatologist who said the rashes were probably due to the Co-trimoxazole. So I stopped that drug and within a few weeks, the rashes faded away and did not come back.

I realise you had a different problem, not rashes, but my experience made me realise that Co-trimoxazole is a very powerful drug with a lot of different potential side effects.

I remained on Ibrutinib for about 7 years and it worked very well for me. Lack of Co-trimoxazole didn't seem to be a problem.

However, when I first started the Ibrutinib (before taking any Co-Trimoxazole), I had a lot of side effects (e.g. nausea, blurred vision, swollen painful joints). But after 6 weeks, most of those problems suddenly went away. I realise everyone is different though, and have different reactions to drugs.

I’m surprised you’ve lost a lot of weight since starting Ibrutinib. Often Ibrutinib causes weight gain not weight loss. Maybe part of the problem is de-hydration after your recent sickness and you need to increase your fluid intake?

Wishing you all the best for your continued treatment

Paula (in Sheffield, UK)

[mrsjsmith]

Interesting that the doctors decided the vertigo was down to co-trimoxazole because like Paula S I came off it because of skin issues and a Dermatologist told me it was a fairly common occurrence. If you get another occurrence of Vertigo ask about crystals in the inner ear moving ( that was the cause of my vertigo ) and the treatment is called the Epley movement. Luckily I only had the one incident and hopefully 🤞 you will be the same. I also wouldn’t rush to try to gain weight, and again like Paula S I gained weight on Ibrutinib.

Good luck with the treatment.

Colette

[RedWyvern]

Hi Coldplaybest

Glad they got to the reason for the vertigo.

As Mrsjsmith suggests, don’t worry about gaining weight just yet as I think most of us gained weight during treatment. I gained over 5kg during the first 6 months of V&O.

There seems to be a few ways Co-trimoxazole is prescribed, I’m taking 960mg twice a week, every Monday and Thursday.

Luckily I haven’t had any major reactions to any of the meds I’m on, and have only a month left, so will soon be drug free 😁

Stick in there, with any luck your through the worst bit, it’s will surprise you how quickly the year will pass.

Andy🏴󠁧󠁢󠁷󠁬󠁳󠁿

[LarryK]

I have had no serious side effects from Imbrutinib. Been taking 560 mg daily since 2016. Since you took several other protective medications it’s difficult to know what exactly caused the distress. Hope it doesn’t repeat.

[skipro]

Love your handle,

Is it after the band?

I've had Tx twice in 6 years but never with Ibrutinib

So I can offer my hopes and prayers you will get it sorted.

Good luck and God bless

Skipro

[Coldplaybest]

Yes. I am a huge fan and admirer of Coldplay. Thanks.