High Uric Acid level

[PThomas]

Have any of you on Imbruvica experienced a high Uric Acid value? iI drink 1 gallon of water a day plus fluids with all meals, etc. but I am on lasix and HCTZ for edema of abdomen and lower extremities.

[starsafta]

Is it possible that your edema is the result of drinking too much water? Or that it is lymph fluid from dying cells rather than excess water?

It is just as important not to drink too much water as it is to drink too little. Excessive hydration can cause hyponatremia, which can lower sodium levels to dangerous levels, as well as affect kidneys and electrolytes, and can lead to cerebral edema. Unless one is running marathons and sweating a lot, drinking more than 2.5 liters a day could be problematic, putting stress on the kidneys.

When I first began to take Imbruvica, I upped my normal 8-10 glasses of water to 16 a day for the first week, thinking it would help my kidneys process all the suddenly dying CLL cells. My electrolytes were way off the next week, and returned to normal when I cut back to 10 glasses of liquid a day.

You don't say how long you've been taking Imbruvica. For the first few months, I had lymphedema of my abdomen, legs and ankles. The rapid apoptosis-cell death flooded the lymph system. It was lymph fluid, not water. My stomach was so distended the first month, making me feel as if I had just eaten a big meal, that I had no appetite. It took 5 months for me to begin to see definition of my ankle bones.

Because the edema was so excessive at first, I took one Allopurinol the second night on Imbruvica. Within 40 minutes, my blood pressure went so far down that I was afraid to go to sleep, lest I not awaken in the morning. Not the drug for me. Instead, I've been taking two Tart Cherry Extract capsules a day, which seems to have been a help.

You might want to talk to your doctor about safe amounts of liquid (whether water, tea, or other drinks) for your body and weight, and to have a blood test to check sodium and other electrolyte levels. Let your doctor know that you are drinking a gallon (almost 4 liters) of water, plus other liquids with meals, and see what he/she thinks.

You can google hyponatremia, or drinking too much water. For example, the Mayo site mayoclinic.org/diseases-con...

Good luck. Hope you find your safe balance.

[newyork8 in reply to starsafta]

Terrific info. Just curious...are there enough lymph nodes in stomach to cause distension of abdomen or is it also the liver and splee? I have both enlarged plus a big stomach and thought it was just being overweight. Thanks

[starsafta in reply to newyork8]

There are lymph nodes waiting to swell all over our bodies. We tend to focus on the ones in our neck because those are visible and palpable. Before I began treatment with Idelalisib three years ago, I had clusters of 40-50mm nodes in my abdomen, mostly along the iliac artery. Some pressed on my bladder, causing frequent urination, which came at a trickle. Some pressed on the ileocecal valve, slowing food passage from the large to small intestine and creating a bulge when it backed up. Huge nodes lived in my armpits. An x-ray of my neck showed many more swollen nodes than the few that protruded and could be felt. So, yes, we have lots of lymph nodes of which we are usually blissfully unaware.

After 19 months on Idelalisib, a scan showed that most of the large nodes in my abdomen were about half the original size. Now, after almost 6 months on Imbruvica, I can tell, even without a scan, that they are significantly reduced. My stomach is no longer hard and distended, and I have to own what is left as the muffin top that it is. I can now go for hours without needing to urinate, and it is no longer a trickle. There are no ileocecal backups.

I thank those 3 big white pills every night before downing them, grateful for their healing powers. May they continue to do their thing without incident for me and for all others who are taking them.

[PThomas in reply to starsafta]

Thank you! My electrolytes are still within normal range. I have been on Imbruvica almost 8 months. I have started wearing mild compression knee high socks and that has helped some too. My hematologist and internal med say to keep drinking. I still have a distended abdomen and only a little in my ankles.

[charliegirl]

My uric acid level rose shortly after starting ibrutinib, and I was prescribed allopurinol. This can happen with any chemo/targeted therapy causing acute cell destruction. I only needed allopurinol for a few weeks and uric acid level subsequently normal.

While it's important to remain well hydrated on ibrutinib, one gallon/5 litres + fluids with all meals is a very large amount. I would agree with starsafta re dangers of overhydration and suggest you check with your consultant

Good luck with it

Charliegirl

[scarletnoir in reply to charliegirl]

Whenever I see 'allopurinol', I like to point out that some of us are allergic to it - I lost consciousness for 20 min and had to be rushed to A&E.

So, if you are given it, keep an eye out for any symptoms - rash, fever etc. which may indicate a bad reaction. It's OK for most, but pretty nasty for some. (More on this in some of my other replies, if anyone is interested.)

[shoshanaz in reply to scarletnoir]

I do wonder if there is a way that we can be tested for allergic reactions to a drug before the time we might actually need it, especially something like allopurinol, which seems to be used quite often.

[Cllcanada Top Poster CURE Hero in reply to shoshanaz]

No, its a systemic drug, you need to try it... a tell tale rash comes on quite rapidly...

I'm currently on 300 mg daily to curb tumour lysis syndrome.

There is an alternative Rasburicase, but it is extremely expensive, needs to monitored a lot and requires blood samples to be chilled through the test process... most labs don't know how to handle it...

en.m.wikipedia.org/wiki/Ras...

~chris

[Mcpill]

I have been on imbruvica for 23 months, and have had edema most of the time. It is a side effect of the drug. After a few months I was put on hydrochlorothiazide. It really was not enough, and I was eventually changed to Furosimide which has helped quite a bit...tho I still have some problems. But, tho my kidneys were fine when I started imbruvica, I now have high uric acid, and my glomerular filtration rate is not good. At my last visit, my specialist suggested it might be time to think about switching to Venetoclax. Since my bloods are otherwise good, I suspect that it is this side effect of imbruvica that has made him think of the switch. I have another appointment in March, and we will discuss this then. In the meantime, I have cut all added salt and am watching the foods I eat (I rarely eat processed foods, etc) . Also reading all the literature and preparing a long list of questions for him.

Hate to switch from imbruvica unless I have to, and am wondering if I should try and hold out until the FDA approves the use of Rituxan and Venetoclax together.

Lots to think about.

Good luck with your treatment!

[Hoffy]

I take allopurinol for that and it has worked well. 300 MG 1 x per day. You taking that?

[PThomas]

Have not been put on it yet. If it keeps rising I am sure that they will try it.

[SunnyCA]

I have been on Ibrutinib for going on 8 months and have been on Allopurinol the entire time - was told I will stay on it until my numbers come down more.

[Chintzy in reply to SunnyCA]

my husband is starting these meds , can you tell me if you took imbruvica and allopurinol at the same time , or do you wait an hour between meds

[SunnyCA in reply to Chintzy]

When I took allupurinol I was told I could take at any time. But I took it separately. Took my Ibrutinib late morning and then took my allupurinol after lunch. I was taken off the allupurinol after 7 - 8 months.