Venetoclax and tiredness: Hi, I'm on week four... - CLL Support

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Venetoclax and tiredness

Kenn123 profile image

Hi, I'm on week four of the ramp up. My bloods are good but since I've upped the dosage to 200mg I've noticed an increase in drowsiness. I nearly always fall asleep about an hour after taking the dose of Venetoclax and allopurinol. I'm so disappointed as the whole reason I'm being treated is because of fatigue. Anybody else had this experience?

32 Replies

Yes. Definitely. So with doctor’s ok I now take it with dinner instead of in the morning.

When do you take the pills?

They might not want you to change the time until after ramp up so your blood tests are more comparable.

Thanks for that. I think as soon as ramp up is over I'll switch to evening to see if that makes a difference. I'm hoping it's the aloprinol rather than Venetoclax that's the culprit? Think you stop the allopurinol after about 8 weeks.

Hi Kenn123, sorry to hear you are having problems with your treatment. I ramped up to 200mg of Venetoclax on Friday (11th June), fortunately I have had no side effects including fatigue. I take the tablets at 8.00 am each day along with a large bowl of porridge. I also drink at least two litres of water a day and a few coffees on top. Along with Venetoclax I take Allopurinol and Acicloir.

Kenn123 profile image
Kenn123 in reply to Photo300

I take mine just after lunch with allopurinol. I also drink 2 litres of water a day. I'm just gutted as I've been doing so well but I need to start a new job in a few weeks so I need energy. It's more drowsiness than fatigue. We seem to be on the same schedule. I ramped up to 200mg on June 9th. Thanks for your input.

Hi Ken. I've been on Venclexta for four years. I take it in the midst of a noon meal. It's not a big meal, but as I had heard V metabolizes in the gut. I wanted to take it with food, I get sleepy about two hours after, but keep busy to work through the fatigue which does subside, for me. I move around and maybe have a bit of fruit or a tiny bit of chocolate, my favorite energy food. I think some drowsiness is not uncommon, but I rarely nap with it. V is a great drug and good for you drinking all that water, especially in the early days as it flushes out our bad b-cells. Good luck with it !! I asked my doc for a MRD test after a year, and there was no sign of CLL in my peripheral blood. I was MRD-.

Kenn123 profile image
Kenn123 in reply to E-Lynn

That's wonderful. I'm so delighted for you. I hope the sleepiness improves. Thanks for that.

CLL23 profile image
CLL23 in reply to E-Lynn

Four years? That's amazing.

I just finished a month cycle, and coming off it was exhausting, as others have reported.

I have been on 400mg Venetoclax since last November. My bloods are "essentially normal" according to the doctor but I am plagued with fatigue. I need to sleep for 9 hours each night and have a 90-minute nap in the late afternoon.

I asked the doc if I could cut back the dosage to 300mg to see if that helped but she said with 17p deletion that wasn't a good idea.

I had much more severe fatigue on Zanubrutinib for the first two years (then it abated a lot for the next two years) and I was hoping for much better on Venetoclax. I guess that might still happen but for now I'm trying to roll with the punches and accept it.

Not easy but, hey, I'm alive!

I am on 300 Venetoclax it was cut back from 400because neutrophils were too low .I have always slept a lot :) at least 10 hours a night but I haven't noticed any more tiredness from the time I started on Venetoclax .I do notice now my red blood cells are getting back to near normal that I have a lot more energy and Im catching up with all those jobs I have put off for the last two or three years :) its now nearly three months since I started on the Venetoclax

Kenn123 profile image
Kenn123 in reply to RosettaClapp

That's great. Hopefully I'll get there too.

Kenn123 profile image
Kenn123 in reply to MrMidnight

Thanks. Keep at it.

Kenn123 profile image
Kenn123 in reply to MrMidnight

Thanks for that. It's a curse the fatigue but at least we're alive.

Hi, if it helps at all I am a little ahead of you and been taking 400mg of Venetoclax for nearly 4 weeks. I was tired to start with and got exhausted taking the dog for a 25 min walk in the woods and around 2pm I crashed (I take V around 8am) and slept for about an hour. But now things are rapidly improving. I can walk briskly in the woods for an hour, put in a good spell on the allotment and have even started on my bike rides again (bliss) I have loads more energy than during the Ramp up phase. I think this is mainly because my haemoglobin has recovered from 68 three months ago to124 as of last Friday but nurses tell me the improvement in energy is also due to better performing liver and kidney functions which began improving with V. Maybe I'm just lucky but I say just hang in there and try and get to 400 and the V should begin doing its magic. Wishing you all the luck in the world and a quick recovery. Patrick

Kenn123 profile image
Kenn123 in reply to prbs2707

Patrick thank you so much. That gives me hope. I'm 51 so I have a lot of living and working to do.

I think a little bit of fatigue comes with the disease, right now I started 20 mg venetoclax I take it in the morning after breakfast , I fall asleep for 15 minutes and then Im good the rest of the day. So far no side effects next week I ramp up to 50mg and then 100mg till I get to 400mg , I eat healthy ,last month I went thru 2 cycles of chemotherapy cyclophosphamide to bring down my WBC from 278000 to 155555 and then got a blood transfusion to bring up my platelets and RBC , now on venetoclax , all I can say thanks to the scientists who developed this drug because I feel great now.

Leewood profile image
Leewood in reply to starlifter

I've gone up to 300 venetaclax fine on 200 but now feeling sick and hair loss but no tiredness anyone else hair loss ?

Kenn123 profile image
Kenn123 in reply to Leewood

No hair loss for me.

Kenn123 profile image
Kenn123 in reply to starlifter

It really is a miracle. I had huge modes in my neck . Not a good look! It's been amazing watching them shrink week on week. Yes thank God for the scientists.

Hi Kenn 123,I've been on venetaclax with ibrutinib for 2 years. I very quickly changed to taking them before bed, with my doctor's approval. This must be ok as I'm in remission now.

Good luck, Phil

Kenn123 profile image
Kenn123 in reply to philbrookes

Great news.

Kenn123 profile image
Kenn123 in reply to Kenn123

We're you getting drowsy too?

I take mine at night before bed. That works for me. Have your doctor check if you are low in potassium.

I'm about to finish my 10th cycle of V - 1 cycle of ramp-up & 9 cycles of maintenance on top of the initial cycle of O. For most of the maintenance cycles I've been at 400mg. Initially had issues w/ low Neuts & Platelets, briefly stopping the V altogether then having neupogen injections and restarting the V at 200mg for a month then back to 400mg. I've split the dosage with 200mg w/ breakfast & 200mg w/ dinner. I also try to flood myself with water and take Probiotics & Imodium A-D to manage abdominal issues. 11 months into treatment and I'm uMRD

Totally normal! I had same experience and it was at its worse for 2 weeks of 400 ramp up...then all of a sudden one day I woke up and felt like I did before the CLL symptoms all started 4 yrs ago! After I was done doing to 2x week blood draws, I pushed my doseage time out 2 hours every day u til I was taking them at 9pm. I pass out about an hour later, but now sleep through the tiredness!

Hoping for quick turnaround for you!

Kenn123 profile image
Kenn123 in reply to imdeanna

That's good to know. Gives me hope. Thank you.

I take 400Mg each morning after my breakfast I've been taking it for about 18 months I can't say I've noticed any fatigue after taking it but I do sometimes get tired depending what I've been doing i try the exercise most days I do aerobics in the house or I go for a walk or the gym and that's when I feel tired but not all the time. Make sure you eat a healthy diet to sustain you during the day. All medication. Has done side effects and I have to say if the various chemist I've had over the years thus has less than others. The only thing have noticed is I'm gaining weight.

Hi! I've been on Venteclax this December will be 2 years. I take mine at 7 PM after dinner every night. I drink water and go potty all day! I had horrible fatigue before starting Venteclax. The fatigue did get worse for awhile after I started. I can honestly say that over the past 6 months the fatigue has been much better for me. I have been able to get more done in the past few months than I have in years! 👏My blood work is finally in the normal range as well. I still get fatigued from time to time but I try to remember to not over do things in regards to chores and work. I'm still trying to get a adjusted to feeling "normal" I guess. Venteclax has made a world of difference for me. 😁 Keep in mind that everyone is different. 💪

Thank you.

You are very welcome. 😁

I’m on month 11 and taking 400 mg per day . I experience tiredness every day and I really don’t have much energy at all. On the plus side, my bloodwork is essentially normal and I’ve been told I’m in remission. I will be stopping the drug at the end of July. It seems to be a very good drug. Other side effect is lite nausea occasionally. (69 yrs.old) I hope you do well on the Ventoclax. I’d say it’s much better than Chemo.

autumnfall profile image
autumnfall in reply to BCSTEELE

Thank you. I've had FCR and yes its much better.

I had same problem with V, so I take it before bed with dinner now, and don't have any fatigue during the day

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