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Medullary Sponge Kidney Disease (MSK) Community
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Avatar universal

Pain Treatment etc.

This is not a question but an information.
About 2 years ago I got some helpfull information from this list about MSK. Since then I have been on a long way.

After I got the diagnosis MSK my kidneys were cleared for stones and calcifications through 4 operations. But the  heavy pain in the kidneys went on. To start with this was treated by morphineproducts like OxyContin, but after some time this was at no help. Then I tried other types of medication among these antibiotics. Some of these were at help but only for a short period, 1-4 weeks. Then I changed to Trimopan (Trimethoprim), 10 mg daily. After almost one year (it was a long time) I was painfree and have now been so for ½ a year. I still take Trimopan.
To stop 3 new tiny stones/calcifications to grow I get Urocit-K (Potassium citrate) 2 tablets twice a day and so far  (1½ year) it has worked out fine.
Through the 2 years I have had consultations including x-rays or scannings every 3 months.
After being fine for some time, consultations/scannings have now been changed to ½ a year intervals.

I hope this can be helpfull for some of you.

Kind regards,

Mogens (Denmark)
7 Responses
Avatar universal
Sorry, the treatment with Trimodan was 100 mg daily

Mogens (Denmark
Avatar universal
All my Dr's say that there is no surgery and nothing I can do. It has come to the point where I am on oxycontin as well and it isn't working. My nephrologist said Uricot-k is a waste of time. I don't know what else to do I am in constant pain and nothing is helping and i have over 20 stones in each kidney and some are 7mm... Where are you located is there a Dr you could rec or what treatment surgery did you get?

Jay
Avatar universal
I am located in Denmark.
I do not think that the type of surgery is important. The main thing is to have your stones removed. That is the first and very important step.
If you after step one still have pain in the kidneyes it is important to find out what type of medicine is working for you.
As you can see from my message, I still had heavy pain after the stones were removed. I tried different morhineproducts and antibiotics and ended up with Trimopan (Trimethoprim) 100 mg/daily and after almost a year I was painfree and still are after further ½ a year.
In my case Urocit-K has been working well so far (1½ year).
Kind regards
Mogens (Denmark)
489228 tn?1291535054
I am glad that is working for you Mogens, the UROCIT K in my case made me worse. The reason we believe it that it alkalizes the urine as well as provides citrate which my bacteria uses so for me it is not the answer. I looked up the TRIMEHOPRIM and it appears you have found the antibiotics treatment that works for your infection.  This is the key!  It is a powerful antibacterial agent for those it treats!  For me we have found the combination that works it 100mg of minocycline 2x a day and Septra 2 x a day along with some other things... but this is my main antibiotics. Without these meds I can not function.  The point here is that what ever bacteria we come in contact with build biofilms  in our stones. Cleaning out the calcifications alone helps but does not take care of the infection.  The combination of a procedure to remove some of the calcifications and taking the right antibiotic is crucial to the best out come of the chronic pain issues.  Finding the right one can take time and patience since they infections do not show on standard tests,  I am so glad your doing so much better Mogens.  

Jay I tried to call you and have sent you a message to try to get in touch with you to get you some info.  I hope to talk to you soon!

Shelly
Avatar universal
I also have MSK...same issues as everyone else here. I am near Ann Arbor, MI. My urologist says Dr. Wolfe would not be able to do any more for me than he can (watch and wait). Am looking for a good nephrologist, and /or GP that can help and understands the pain issue as well. Thank you for all your help on this forum!
489228 tn?1291535054
As far as treating you on daily basis I think your uro is right however, does he do the procedure Dr. Wolf recommends for our pain?  If you want I will send you that article he has written on MSK and chronic pain, it might give you some insight?

Shelly
Avatar universal
Thanks for the reply. No, I don't think he does Dr. Wolf's procedure. I would appreciate reading the article on MSK and chronic pain. Thanks!!
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