Just joined MSK and saw your post. I was diagnosed with MSK 12 yrs ago and have passed over 150 stones...without any surgery, thank god! But suffer daily and on no pain meds...it is just part of my day.
I was going to Dr's in beginning, some good some not so good, and jumped off the dr office wagon 10 yrs ago. The past week I have been getting all my tests updated due to horrific pains. Yrs ago they wanted to put me on meds but refused due to side effects. I just drink lots of water and try to eat healthy but both my kidneys are full of stones...
How r u feeling and are u happy with your dr's?
Thanks for your reply.
I am happy with my urologist. I HATE my nephrologist and will not go back. He told me not to take ANY vitamins (no science to back that up) and would not listen to my concerns regarding the thiazide diuretics. Years ago my urologist said, "Don't take thiazides unless you want to be a diabetic". Well, now that I have passed over 50 stones in the past 10 years he thinks I should take them. The nephrologist basically demanded that if I did not take them, he would not see me. I just think that for right now, diabetes is worse than k-stones...
I have read that potassium citrate reduces calcium kidney stones even where urinary citrate levels are normal and urinary calcium levels are high (that's me). I would really rather start there and see how I do. What is wrong with giving me a year on this and see how I do? I have reduced my sodium intake to less than 1500mg per day which should also decrease stone formation as well as drinking a TON of water.
My urologist is very conservative. He manages the passage of my stones. He does not take me to the OR unless there is sign of infection or if I say I can't take it anymore, or any other serious reason. I agree with that policy, as a former OR nurse I know that every time I go into surgery I put my life at risk. Therefore, I have passed stones as large as 8-9mm and often have stones in my ureter for weeks to months with sporadic pain-mostly manageable without pain meds.
How do you manage your daily pain? Are the stones you pass very large? I take pain meds maybe a couple times a month, but really regret it afterwards because it wipes me out for days, but I just get so tired of the pain, I breakdown and take it.
Let us know what the docs say, I would be interested in hearing. Hang in there and stay strong!
Well technically there are two types of diabetes and there would be zero risk of developing the worst form which is genetic and can only be passed if someone in your family was a diabetic (father,mother,grandmother, great grandmother,so on).
Just to give you some background my brother died of diabetes at 9 years old due to a doctor making a mistake and leaving it untreated. So I'm stating it runs in my family and my urologist was well aware of this when he put me on it.
Now I take 25mg of hydrochlorothiazide and it has made a world of difference. I was having stones range from .5mm- over a cm many 5mm+ stones. Since I started it and having the large ones removed I haven't had a stone over 3mm. It's been a life saver literally. So from my personal experience the medication is very effective in the treatment of stones. As for the increased risk of diabetes, drinking soda or eating candy will increase your risk to develop it any sugary food really and I'm sure many people with this disorder still do such. I would weigh your options I'm not going to say its worth it because for you personally it may not be. There are alternatives but they never worked well for me. Now tho if you think it's going to change the amount of pain your in, I'm sorry your mistaken.
I've been in pain management for over a year and take 3 lortab 10's a day. It is only because of the pain medication that I can even function such as going to school and work (hell even getting out of bed for that matter). Honestly I think its having the right combination of medication and a healthy lifestyle. Severity of this disorder and disease it entails is different with almost all victims, everyones body is different and reacts differently to medications. Potassium Citrate has been known to be effective on stones in NORMAL people but we develop stones regardless of our diet. If it really worked I'm pretty sure doctors would be prescribing it left and right. It never hurts to try though. Sorry I think I'm just sort of rambling now but in short YES since being on hydrochlorothiazide I have not required surgery which before I was having an operation almost every other month. Saved my life I'm sure or at least my financial future
I too have been taking HCTZ 25 mg for a little over a month and I have noticed a huge difference. I started taking it back in 2009, but was unable to go back to my old urologist so my refills ran out. I just started taking it again and I no longer wake up with swollen hands, face, and ankles. That in itself is a huge benefit to me. The doctors tell me it is supposed to help prevent stone formation, but as I am currently getting ready to have my 4th surgery for the stone I currently have, I have not experienced this yet. I am hopeful though that what they say is true and I will have fewer stones as time goes on.
Thank you for your response. It makes me feel more comfortable about the whole situation. hearing that it has helped you in reducing #s of surgeries is good to know (I have spoken to some who have noticed no difference in stone formation or passage). Hope it continues to work for you! Is your daily pain from passing stones, or pain in the kidney due to the MSK?
Thanks for your reply. I wish you the best on your surgery and please let me know how the HCTZ works for you. Is your surgery a ureteroscopic procedure, lithotripsy, or directly into the kidney? Let us know how it goes!
I'm supposed to be starting HCTZ on Monday. I'm also starting Bactrim daily and tripling my dose of potassium. I'll let you know how this works out for me. I too have the swelling in my hands, feet and ankles and I pass at least one stone a week, but frequently it's more than that. They claim the HCTZ is supposed to dilute and make less stones and also help with the swelling. The bactrim is supposed to help with the chronic infections and pain...we shall see! The other thing I have heard which is proving to be true is limiting my intake of meat/protein to 6oz a day. I hate this because I am a huge meat and potatos person, but what other choice is there?!?!?!
I am having the ureteroscopic procedure done this Monday, 10-10. I have already had 2 lithotripsies for this particular stone & according to my doctor they didn't work. He told me after the second one that the large stone in my left kidney (9mm), had broken up into 3 pieces, but when I went back 2 weeks ago, he said it was still there. I'm not sure if he really knows what he is doing or talking about. He is going to take out the right stent (yay!), and replace the left one (boo!). I am a bit concerned because I have had them since the end of June & the paperwork they gave me said you aren't supposed to have them over 4 months. The end of this month will be 4 months and I'm worried about permanant damage. I guess time will tell.
Hi, I was diagnosed about 7 yrs ago and passed only about 6-8 stones all <5.0 mm .. calcium oxalate or calcium phosphate. Welcome to our community. Having a small am't we never went the route of meds.
Yea I would say it depends on the severity of your situation. Mine is pretty bad and I'm young so I'd like to add whatever time I can. I was told thiazaides were my best option in doing so. I pass stones on a weekly basis which are replaced by 2 more it seems like everytime. I'll often be passing stones in each kidney at once. Thiazaides keep em small enough that I can still have a life and manage this disorder. It's sad though to a point because my meds have gotten to the point i didn't think they would this quickly. My situation is still deteriorating much quicker than anticipated and I now have to take diluadid and toradol in order to control the pain aspect of things. I'm also on a long term antibiotic due to the frequent infections. But i guess thats just the cards life deals you sometimes. I hear about most cases of this disorder being benign and assymptomatic I'd love to hear about a case as such because everyone I've talked to, its just absolutely one of the worse things you can imagine.
Although I do not have MSK, my 23 year old daughter does. One thing I couldn't help but notice in your post is that you have a high calcium level. Sometimes high calcium can be related to hyperparathyroidism. I was actually hoping that this was what my daughter had since surgery can fix it. Anyway, you might want to see an Endocrinologist to rule out hyperparathyroidism if you haven't already done so.