Pirtobrutinib

[difor29]

Is anyone on Pirtobrutinib and have a constant salty taste in mouth? I was told that I didn’t have to drink a lot of water while on this drug. I’m wondering if I’m dehydrated.

[Panz]

You really should be drinking 8-10 glasses of water a day….everyone adult should no matter if you are healthy or dealing will issues. If you are doing that you shouldn’t have to be concerned about dehydration unless it is hot, humid, you are very active then you might need more.

Not many people know this and a lot of people don’t drink anywhere near hat much water. I learned this in a nutrition class.

If I were you I would document how much water you are drinking and see if that address the salty taste you mentioned. There are some medications that do leave a metallic taste in one’s mouth.

All the very best to you!!!

Panz🙏😊👍💕🍀🎃🍁🍂🍃

[difor29 in reply to Panz]

Thank you. When I was on Venetoclax, I drank 70 ounces of water daily. It was hard as I’m not a water drinker. I started back up again today so we shall see if that helps. I don’t have a metallic taste in my mouth but a VERY salty taste which is driving me crazy! I see my oncologist this Tuesday for bloods so I will be sure to ask him.

[bigunwill2]

I take it and drink at least 12 oz of water when I take tablets. . I’ve never had a salty taste.

[Nicebaps]

Hi

I've recently come off Pirto having been on it for the past 22 months or so. Other than being neutropenic a couple of times I didn't really have any other issues with it.

Hope you get it sorted soon 🙂

[Louie_CC]

I’m on a 3 drug trial that includes Pirto. No salty taste. You should be drinking at least 64 oz. My side effect from Pirto is an elevated heart rate but not Afib like Ibrutinib caused when I took it 5 yrs ago.

[5214]

I started taking it and I don’t have a salty taste but I do have problems with eating everything doesn’t taste right to me. I have been on it 2 months and it’s very hard for me a lot of bad headaches. I’m hoping maybe that my body will adjust and they stop. I take 2 every night I wake up fine but around the evening I start very awful very different just kinda off.

[difor29 in reply to 5214]

I’ve been on it for 3 weeks. Aside from the salty taste, the fatigued is bad!

[AussieNeil Partner Administrator in reply to difor29]

At the three week stage, pirtobrutinib will still be kicking out massive numbers of CLL cells into your blood, where they eventually die. You are naturally going to feel fatigued, because your body is working hard recycling what it can from billions of CLL cells, remodelling your shrinking nodes, spleen and cleared bone marrow, excreting what can't be recycled from those deceased CLL cells, along with the metabolites from the treatment drugs.

Use your urine colour as a fairly reliable guide to how much fluid you should be imbibing

healthunlocked.com/cllsuppo...

Neil

[difor29 in reply to AussieNeil]

Thanks Neil. If you look at my bio, I have Non Hodgkin’s Lymphoma. I have done treatments that they do for CLL though. I failed on a clinical trial of Venetoclax and Rituxan and I also failed with Zanubrutinib. I’m hoping the Pirtobrutinib works. Out of all the drugs that I have been on, the Pirto is kicking my butt!

[CycleWonder]

I have been on Pirtobrutinib since Nov 2022. I followed the advice of SofiaDeo and made sure to drink a lot of fluids and rest for the first four weeks of starting the new medication.

I never experienced a salty taste and only mild headaches, quickly sorted with Tylenol.

It has been an effective medication with only a few, mild side effects.

If you don’t like drinking water, you can drink other fluids. I drink decaf acid free coffee with non fat milk. That is also hydrating.