Kidney disease and ET, HU

[nightshadow]

Since being diagnosed with ET JAK2 in January '21 I have noticed that my blood tests are showing level 2 kidney disease. From what I have read and from what my doctors have stated, there doesn't seem to be a great cause for alarm, just increase fluid intake.

But has anyone else seen a correlation? Going back on my blood tests since 2016, there had been a steady decrease of kidney function along with the increase of platelet levels. Any one else have this pattern? I can't find much online, other than vague well, maybe type of results.

[Wyebird]

Hi yes I noticed my GFR getting lower and raised this with my heamo. Apparently because of the drugs the blood test can give a false reading. A few weeks ago mine went down to 59 ( lowest it’s been) that gave me cause for concern but didn’t notice the reading whilst in clinic. My latest blood test ( Oxford trials) has shown 80. The highest it’s been for years.

It’s not shown on a FBC. I’m going to enquire so more.

[hunter5582]

Also experienced something similar. The kidney function is not directly related to the MPN. They both correlate with age however. Kidney function can weaken with age. MPNs can get worse with age. We need to stay well hydrated to deal with both. Having said that, it is possible for a thrombotic event to affect the kidneys, but that does not sound like what you are describing. Some of the meds used to treat MPNs can also adversely affect the kidneys.

I added 32oz of H2O to what I usually drink during the day and my eGFR popped back up into the normal range. Easy fix and preferable to other options.

[nightshadow in reply to hunter5582]

I have been trying to keep up on water intake. Something that I tend to forget is that, as I live live in dry climate, I need to add a bit to the recommended amount.

[hunter5582]

Much rather take more H2O than yet another medication. WAY easier on the body. Too bad beer does not count. Rats!

[nightshadow in reply to hunter5582]

or wine. Sigh.

[clubdino]

I also have a low eGFR for my age which would equal stage 2 kidney disease but doctor didn't seem too concerned. I already drink a ton of fluids. I'm not convinced that my kidney function is not related to my ET as both of the problems started in my 20s. Could be something like microclots that damaged the kidneys...seems plausible. There is still a lot we don't know about MPNs.

[nightshadow in reply to clubdino]

Yes, the issue of being a rare disease does limit the data set a tad.

[Loooonglife]

Hi,There appears to be a link between increased risk of thrombosis and declining kidney function in MPN. Also, MPN patients are more prone to develop kidney dysfunction. This info is based on the following article:

mdpi.com/2072-6694/13/16/40...

Maybe worth bringing to your doctor's attention.

All the best to you!

[nightshadow]

Thanks for the link. It looks a bit dense to get to through the actual article but the summary was enough.

[MichaelS]

I was diagnosed with PV in 1983 and was soon put on hydroxycarbamide after a stint on Busalfin. About 20 years into the course my platelets grew to 880 and I was given analgrelide which brought the platelets down but raised the Creatinine to about 150 to in two phases of analgrelide. I was referred to the urologists dept and they kept a watching brief on me.

When I stopped the analgrelide the Creatinine stopped rising, and it is now, very slowly going down. I am now on Ruxolitinib and have MF since about 2009, but still keeping well 🙂

[MichaelS in reply to MichaelS]

I had written cholesterol, but it should have been Creatinine, and I have edited the post

Sorry for any confusion. I am 75 after all 😉

[nightshadow in reply to MichaelS]

Thanks for the clarification.

[Kelly2]

I have a kidney disease and am on Hydroxyurea. I had no idea they are connected. I want to have surgery but my platelets have risen I am desperate really to save my kidney! Prescription yesterday two per day to bring them down and have the operation!!!

[nightshadow]

Best of luck! I hope you can get things under control and the surgery is successful

[Kelly2]

I am two years in hydroxy and since last year I have a kidney problem. I had no idea there is a correlation with the two. I am currently waiting to see whether I will have an operation! So very upset and worried!