Kidney Problems

[MariaB27]

Hello, Has anyone had a serious kidney problem while taking Hydroxy? I have been taking it for 3 weeks and after an initial reaction been very well, but my kidneys now have a higher creatinine level. Any help would be very appreciated, thank you Ivy

[Superwoman]

Hi Ivy, sorry to hear that you have a problem with your kidneys, my only thought is are you drinking plenty of water to keep them flushed, as Hydroxy is very toxic, at least 2ltrs are recommended in a 24 hour period this is very important more if you can tolerate. I know that it can be a bit too much, but if you take into consideration any tea or coffee that you drink this helps I always have decafinated in both.

I have been on it now for my ET for over four years now,, it took a little while for my body to get used to it, but now all is good, levels are all normal, long may it last.. on another note I did adjust my diet to include lots more veg and fruit plus I make sure it is well washed before eating, as you don’t know what chemicals get sprayed on them while growing and then for storage, I have always eaten well so this was not hard to do.

Has your haematologist said why or what the reason could be why your levels are up? It could take a while longer for it all to settle down.

So good luck, and keep us informed as to how you are doing, we are all hear for one another.

Jean 😀

[MariaB27 in reply to Superwoman]

Thank you for your reply Jean I am actually at hospital waiting to see my and will ask him. I will also take note of all your comments which I hope will help Thank you again. Ivy x

[mickey64]

Hi Ivy when I was on it I did get pain in the kidney area after a couple of months on it and that is part of the reason I stopped taking it but it probably was nothing just I did not drink a lot of water. I am going to try it back but at a lower dose, I'm waiting for the additional mutation testing that they recommend now before starting Pegasy, then if everything is good I will be trying Pegasy. Superwoman is right you have to drink, drink, drink, which is something I had a very hard time doing. My Doctor said you have to flush it through the kidneys that is the need for all that water.

Good luck, Mickey

[MariaB27 in reply to mickey64]

Thank you for your reply Mickey, its interesting different opinions, my consultant said she had never heard of kidney problems in the ten years she had dealt with Hydroxy but has told me not to take it for 3 weeks just to see if there is any change. My blood levels after taking Hydroxy for three weeks were nearly normal and after the initial week I haven't had any side effects. I really try to drink lots of water but its not easy. Looking like I might need Dialysis, waiting for further tests oh dear. I have also been taking Lansoprazole for 4 months and see studies have shown that to cause kidney problems, it's a minefield all these drugs. cheers Ivy

[mickey64]

Hi Ivy great news that the HU worked wonders. You blood work can change all the time and it just depends on how long the blood is sitting, who is taking it, who is reading it. I have seen such a difference in different labs. I would suspect that HU would not cause that much of a problem after such a short time but who knows we are all different. It never did alter my blood work as far as kidneys and I just could not get that water down. The reflux medicine is know to cause kidneys problems now, many articles on it. My husband is on it and he has Barretts so he has no choice but even the insurance company's now tell you about the side effects. Kinda of scary because people have taken these things for years and it is hard to get off of them. Hope you work out ok. How high were your platelets and how old are you? If they dropped that fast HU must be working for you, mine after 4 moths of taking it everyday hardly dropped. Good luck

[MariaB27]

Hi Mickey

my platelets were around the 750 and are now 508 my consultant was very pleased about that. I wish I had mentioned the lansoprazole to her but only saw the article when i came home. I will tell the kidney specialist when I get my priority appointment and have decided to stop taking them at the moment. I am 73 but have always felt younger, always going on holiday and keep very busy so this has knocked me for six having to cancel my holiday next week, it can really get you down. This site is such a lifeline to us all It's a pity you don't live in the UK because we have local MPN forums to visit and I have found it so helpful made friends and was told to keep to this website as so many give incorrect information. Best wishes to you keep strong Ivy