I have been on hydroxycarbamide for 8 years. The only problem has been increasing signs of kidney trouble. When I was first put on hydroxycarbamide I read an American Patients’ forum in which a new guy was als like me starting on hydroxy. He said he was reasonably happy. the only snag was the likelihood of kidney trouble. Someone else said it was only a tiny minority who were affected. Has anyone anything to add on the subject?
Jumbo4
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Hi @jumbo4 I have Chronic lymphocytic leukaemia (CLL) and have not had any treatment.
Post Chronic lymphocytic leukaemia (CLL) diagnosis I was diagnosed with chronic kidney disease but have not had any treatment for it.
Who knows.
Look after yourself and please keep asking your medical team everything that is on your mind.
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Hi @jumbo4
I would discuss with your team what exactly is going on with your kidney function & see what their opinion is about your continued use of Hydroxy. They will be the people to take assured advice from & will only want what is best for you. Everybody reacts differently to all drugs. When you say likelihood of kidney damage are your blood results abnormal? Have you had a scan to confirm a kidney problem? I will also recommend you speak to one of our nurses who I will copy in on this post. @LauranBloodCancerUK please feel free to also contact the blood cancer helpline 0808 2080 888. Please look after yourself & know we are here to support you 
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Good Morning @jumbo4,
How are you today? As others have mentioned Hydroxycarbamide can affect how your liver and kidneys work. This is usually mild and goes back to normal after treatment but it is important to raise this with your treatment team so they can monitor both your blood levels and any physical symptoms you may experience.
Hydroxycarbamide can also in some cases cause problems with passing urine. So do tell your doctor or nurse straight away if you have pain or difficulty peeing.
Can i ask, have you had the opportunity to talk your concerns through yet with your consultant or nurse specialist at all? It’s likely they will both monitor your symptoms if you have any and also will be monitoring your kidney function levels via your routine blood tests & if required additional medication to help protect your kidneys may be required.
Should you wish to talk anything through Please don’t hesitate to give our helpline a call at any time.
Take Care, Lauran
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Hello Jumbo- I have a MPN- ET- and had 13 years on Hydroxycarbamide without it leading to kidney problems, although a kidney check was part of my regular blood checks - I think like all treatments for blood cancers it is a possibility albeit a small one - I have been on Pegasys interferon now for three years and again kidney checks are part of my blood check tests. It is essential on Hydroxy to drink lots of water, more than the average person in the realms of always have a little bottle with you and ensuring lots of sips for regular hydration (easy to do in summer, easy to forget in winter so a bottle with you sort of does the reminding 
) - I know I was strongly advised this when I first started HU and it made a big difference. It protects somewhat as long term use does have its effects and as with MPNs the treatment is ongoing and permanent there are no breaks for any effects to resettle. If your bloods however are showing kidney issues over several tests (as I know on occasion I had raised liver levels which would always be normal next blood test) your consultant should be looking at that so do talk it over with the team - there are alternative treatments in Pegasys and also anagrelide that are worth discussing - keep us posted - all the best
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Erica, thanks for reply. I wonder whether you have seen any of your creatinine scores in your bloods. Chronic kidney disease could mean CKD3a or CKD3b(that’s me) or CKD4, I assume you are probably not 4 yet or you would surely have treatment, but I am guessing a bit. My concern was whether people on ET or Polycythaemia vera (PV) with hydroxycarbamide might be a bit more prone to kidney problems after a time. JUMBO4
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Thanks Jo, I will certainly discuss it with the team
JUMBO4
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Jilly
THanks very much. I have never received any advice on drinking extra water for hydroxycarbamide. I will certain have a go at stepping up consumption. I suppose it has to be water and not tea and coffee?
JUMBO4
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Goodness that’s such a shame that you have never been advised that - I was fortunate to be diagnosed and treated initially by a very experienced consultant who as he told me had dealt with Hydroxy for decades in patient care so I took note of all he said Yes it does make a big difference and yes do drink water - as well as you tea and coffee of course (both of which I love and drink!) but have water with you and drink sips thro your day to just keep hydration topped up - you will find many MPN patients do this and benefit from it. Not so easy in winter I know to drink water but it’s worth it
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I was diagnosed with stage 3 CKD (chronic Kidney Disease) 10 years ago but no medication was suggested or offered, in feb 2022 II was diagnosed with ET (blood cancer) and get hydroxycarb as my medication, in early days of medication i did experience kidney and liver pain but this has reduced since and touch wood will remain quiet, think you just have to keep your team informed an they can check when taking repeat bloods Good luck
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Jilly
I will certainly try the water. I just worry that I am now 84 and a lot must have happened in that time. My family usually live a long time.
JUMBO4
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My creatinine is high and phosphate is nearing the upper limit. I don’t feel ill though. I am between haematologists (number 8 is coming after Christmas) but the GP is helpful when I can get to see him. JUMBO4
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Colinb,
The approach to kidney problems seems a bit relaxed where I live, and I dont think anyone would put me on a different drug unless hydroxy C could be proved to be responsible for poor blood results relating to kidneys. The only advice I have had so far is to keep the lid on the daily protein consumption.
I am ckd 3b like many but creatinine is going up all the time.
JUMBO4
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Lauran
I will phone yourteam in the next few days about this.
JUMBO4
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I have only been on hydroxycarbamide since beginning of October, but have had a series of UTIs since! I was prone to UTIs before (maybe 3 a year) and consultant says hydroxy is likely cause for these new episodes. If they continue I will have to add prophylactic antibiotics to my growing list of meds.
Good luck!
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