Hi Amy, I am sorry to hear that your hubby is suffering so much. You did not mention where your from? Well go to my profile and read my journal I have mentioned alot of things n medicines try and see if you could suggest to your doc(it should be a Nephrologist) no other GP would understand this diesease. Plz let me know if your able to read my journal other wise I will let you know through this. Don't worry keep your faith and hang in there.
MBS786

I was reading what you were saying about your husband. MBS is correct he needs too see a Nephrologist. The Nephrologist will control all his meds while a Urologist takes care of the stones themselves the two doctors need too work together.
I also had the stents and my body rejects them always have to be removed. Have they ever removed his stones or has he had alot of stone obstrustions.

R.T.A. is hereditary,my mom had it,I did,my daughter....I only know that R.T.A is specific in that acidity is very much a factor in forming stones,they looked at my stones and saw they were of uric acid,acidity,calcium,crystalised,First what med is he on beside pain pills?Highly important to me to be on Polycytra k solution,it makes body alkaline,prevents more stones dramatically,and can help with the stones he has,

Hello There!!!
I have been diagnosed with Sjorgrens and RTA both on 2008 one year after I had my daughter. I have been struggling with both these diseases since diagnosed. I have been on many meds and treatments but my biggest problem I have is I get low potassium usually every few months causing me to be a regular at the ER here in my community.
I just had treatment of Rituximab in April and still trying to recover from the horrible side effects. I'm lucky I drink a lot of water and pass stones quite easily.
My daughter is now 4 and is my life. I have a great support system from my husband and family,friends.
I highly recommend your husband to see a Nephroligist they are aware of this disease and no the right treatments.
I wish you and your husband Goodluck and send a hug to both of you. I know you as the caregiver (as my husband is also) can be very stressful but think positive hopefully he will get on the right treatment soon. Keep us updated big hugs :)

Hi Amy, It is so sad to hear your husband is having such a hard time. A Nephrologist is a must! Once he is diagnosed correctly and gets the medicines he needs he should feel better. My RTA came on out of the blue about 7 years ago and it was a huge blow. No history of it in my family, no underlying causes, not a clue why. But once I was diagnosed and found a wonderful doctor it changed everything. I have my days and right now it's one of them and just happened to be looking for advice when I noticed your post. I hope and pray he finds a great nephrologist and things get better. Will be praying for you and your husband :)

Hi every1, Amy I hope you have found a good Nephrologist for your husband by now and he is on with the proper treatments. If yes than what did they give him and how is he feeling now? I don't know if you read my journal my daughter has DRTA and she is 7 years old now, she was born with the disease, she has Nephrocalcinosis with this. She has been taking Sodium Bicarb and Urocit K(potassium citrate) eversince she was 2 and a half months. She developed bone problem also when she started to walk. She has had about 16 fractures in her both legs and about 7 in her both arms. Her legs were pined about 3 years ago, but after that surgery she has not had the will to walk again, but when ever she tries with a Uwalker she gets a fracture in her arm. She is also given after every three months a medicen known as Aminomex. Due to this here fractures stop.
We are just stuck in a circle if we treat her bone than than there is a fear of her kidney problem.
I was wondering if all of you can help me in with regards to bone problem and she also has morning nausea, it is so bad at times that it lasts for several hours. No antacids work, only for few days but than again it comes back. When this period comes it stays for atleast 2 weeks and in these two weeks she starts to look pale and gets dark circles and does not eat much.
Please if any of you go through this or have gone through it please share and if you have been given some treatment please mention, I can suggest to her Docs. I would be really greatful to all of you for the rest of my life. She is the only child and she is my life.
Please help!!!!!

Hi MBS, The only thing i can think of for nausea is from personal experience. As a child I would drink the liquid polycitra instead of urocitk. (Not sure when I switched to urocitk, maybe 5 or 6years ago). Anway, urocitk has been much harder on my system(heartburn and acid reflux than polycitra ever was. Maybe ask the dr if she can try that? I am even thinking of going back to that as the Dr did not seem to think it should cause stomach issues, but it definitely has as he has increased the dosage. Best wishes...