Hi, I have had RTA for 7 years now. It has been very difficult for me to handle, and come to terms with. I have been told it is a rare type that I have inherited from my parents, there is no cure, and can only be managed. I have and continue to form kidney stones at a rapid rate in both kidneys causing blockages on a monthly basis, requiring ops, hospital admissions, excruiating pain ect.. and disruption in my life. Im now unable to work, plan anything, and have to live life based on a daily basis. Having this disease has stripped me of almost everything! What type do you have? What symptoms do you experiance? I have felt like I was the only person in the world with this painful illness.

Thank you for replying to my post. I do know and understand what you are going through. I have the exact same type of RTA. I isn't any fun and very hard to keep under control. I am one Potassium with citrate and sodium bicarb which is a new med for me due to have excess of acid in my blood and this is suppose to help with that. I do know there is not one day that is the same you have good days and bad days I just try to make the most of the good days and live them to the fullest as possible. I was also dx with Sjogren's Syndrome which came from my RTA it is an autoimmune disorder which makes things alittle worse. Have you had any surgeries for you stones and what are your treatments. I am very excited to finally come across someone that can relate to this.

I was recently diagnosed with RTA , one more step in dealing with Chronic Kidney failure. I had renal cell carcinoma in my right kidney thus a nephrectomy in 2007 and then to find out my left kidney was in Stage 4 failure. I gla d to learn of the RTA as I could not understand nor accept the times of weakness and confusion. At least I know what is going on now. I am on a script of 650 mg of sodium bicarb. Seemingly such a simple solution????? I do feel better in the 10 days I have been taking it. Do still have times of weaknes and just trying to roll with it.
Susan

I am so sorry to hear about your kidney failure. You have been through alot. My kidneys aren't functuning at their best but they are nothing compared to yours. I'm glad the sodium biocarb is helping. I am on the same dose which was just started maybe about 2 months ago due to a hospitalizion. My biggest problem is my pottassium it goes so low all the time. With RTA on top of other things it is a day to day thing. Some days we feel really good and others you can't even get out of bed.

Hey,

I'm 43 and have had Distal RTA since I was teenager. I think only people with RTA can relate to what people with RTA go through.

Over the past few years it has been out of control to the point where I'm passing gravel or stones every day and can guratee multiple surgeries each year. I think this is killing my bones too which hurt a lot and break easily.

I'm sticking with the meds, the fluids, etc. but not really helping.

Definately refuse to have it rule my life - trying the mind over matter approach!

You are so right alot of people don't understand what we go through. What meds are you on? RTA does effect your bones I have a bone density test once a year. Sometimes you have to go to alot of different doctors until you can find the right one to treat RTA and all the other things that come along with it.

I was diagnosed with Distal RTA at birth. I'm 32 now and the symptoms seem to get worse with age. The biggest difficulty is trying to maintain a relationship while dealing with this disease.

Maybe if we all share what we do on a daily basis to cope, we can together find solutions to make it easier to adjust to.

For example, you'll never find a doctor to tell you this but I have found I require different amounts of the medicine on a daily basis. Physical exercise tends to cause me to need more of it. When I have a kidney stone the amount of medicine I need increases by about 50%.

The liquid medicine I take 4 times daily to treat RTA causes stomach pain and nausea each time. I wonder if there is a pill form available? To ease the pain of the medicine I take it with a full glass of orange juice and then chase it with a glass of milk.

Eliminating caffiene and sugar from my diet helps the way I feel and reduces the amount of medicine I need. But its near impossible to eat a low carb/no sugar diet long term.

What meds are you on? And yes alot of excercise can cause alot of fatgue or dehydration. I have had this disease for many years. My doctor had told me this is the hardest to control it changes on a dialy basis.

Nancybu:

If you mean me - I'm on Polycitra, or rather the generic version, which is called Tricitrates.

For years I took a combination of potassium bicarbonate tablets, which are effervescent and dissolve rapidly in water, along with Aldactone pills, which are a blood pressure medication but supposedly have the side effect of causing you to retain potassium.

I used to be on liquid polycitra. It wasnt so bad but at some point it would make my stomach hurt. I had to eat something with it or take it after meals. I been diagnosed withdistal RTA since i was like 4 months old. I had it for almost 27 years. I have gone from different meds and doses. Its a pain in the butt. Right now I am on potassium pills. The hospitals love me more than I love them. I make the best with it in life for I refuse to let it win me over.

I am on the same the pills the liquid is terrible. I have had this disease for 15 yearsalso with have the kidney stones in both kidneys. I have surgery for them but they just come back. I have also developed an autoimmune disorder for all this. And yes the hospitals do love us most times they have no clue or have never heard of this until they call your doctor into the hospital. It gets so frustrating the amount of different specialists you have to see on an ongoing basis. I am very lucy I have a family that understands when I have bad days. I also work fulltime with an understand boss most times lol. I feel we all have two choices either we try our best to live with this and find humor in alot of things or we could just sit down and cry I choice the humor. Sorry for going on so much with this post but I haven't had the chance to check this for alittle while.

Hi Everyone!!!!
I am so happy to come across this group. I am 30 yrs old and was dx with RTA and Sjogrens disease about a year half ago. I had my daughter two half yrs ago (they say pregnancy brought on these diseases).
I am currently taking prednisone,cellcept,potassium,bicarbonate,phosphate,actonel up to 4x a day. Potassium continues to drop about every few months. It is hard to deal with the every day changes my body feels.
I was a healthy young lady with a very active social life and loved my job. Right now I'm off work trying to get this disease under control and to have my life back.....but it seems as soon as things start to look good and feel better I'm hit with another "episode".
Does it ever get better??

Hi there. i am a mother of two young girls who have rta type 4 due to hyporeninaemia. Just looking to see if anybody else has this. Really would know how this will affect them as they get older. my 6 year old spends lots of time in hospital with dehydration as she is very prone to picking up bugs. i have never been told about the possibilities of kidney stones. Girls are on lots of meds and also a very strict low potassium diet. Girls on high doses of sodium bicarb. We havn't found anybody with this before.

Hello Allyg,

My wife also has type 4 RTA. It's amazing how different the types are, so we're glad to also find someone else with type 4.

Matthew

Hi, my 17 month daughter was just diagnosed with RTA. What should I expect for her? I am being told that she will do "just fine" with a supplement, is that true? Is it possible that she might grow out of this condition? We are seeing the specialist this week and will have more details about her RTA.