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Medullary Sponge Kidney Disease (MSK) Community
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Long term medication side effects??

I'm so glad to find an online community of others with MSK! I'm a 34 year old female, and have had kidney stones since I was 16. At 19, they repaired a ureter defect and said that I wouldn't have stones again. During pregnancy a few years later, I had stones again, so badly they had to perform a cystoscopy and place a stent when I was 5 months along- that was one miserable pregnancy. With all three of my pregnancies I had to take antiobiotics for the duration and have lithotripsy within 4 weeks of giving birth. Once again, the urologist said I wouldn't experience stones outside of pregnancy. Right. Two years and two more lithotripsies later, they finally found MSK in my left kidney- by this time I was having one lithotripsy per year and forming about 30 stones per year. I ditched my old-school urologist who told me that medication wouldn't work and that I was going to lose the kidney (due to the repetetive procedure damage) and found a urologist who gave me a shot. He prescribed hydrochlorothiazide and Urocit-K. It's amazing- other than some occasional flare-ups, I haven't had a stone in several years.

I am concerned about the long and short term side effects of the hydrochlorothiazide. Outside of having to be conscientious about hydrating and really watching sun exposure, it doesn't bother me to take it daily. However, a nurse recently told me that there is research that shows a link between the hydro. and diabetes, and this causes me great concern since diabetes runs on both sides of my family. I am healthy and active at this point, but don't want to exchange one evil for another. At times I'm tempted to stop the medication and roll the dice on whether I keep the kidney or not. Additionally, I've developed significant heart palpitations and skipped beats over the past month, although my potassium levels test normal and I take supplements.

Any advice out there to be had?
1 Responses
168348 tn?1379360675
COMMUNITY LEADER
Hi

Welcome!  I don't have an answer but wanted to stop by to say hello!

C~
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