Uloric concerns

[Done4Kidney]

I’m 32- known I’ve had Alports all my life but really never did anything until 2012. Mostly because insurance.

Now I’m seeing a nephrologist and have been on several BP medications and various other ones to help keep my levels balanced.

My concern and question is about a drug recently prescribed to me called Uloric. Several googlings have shown that this has had one of those “call this number if you or a loved one...” due to heart attacks, strokes and the like.

My dr failed to mention anything about this so... should I be worried about taking this?

[Bassetmommer NKF Ambassador]

HI Done4

What a sad name you have chosen.

I looked up Uloric and it seems to have a very serious box warning. I would definitely speak to you doctor about the side effects. Most doctors choose drugs knowing the side effect and decide that the outcome is worth the risk. However, he/she should have allowed you the decision after educating you on the possible side effects. Have you taken Allopurinol and it failed? Both drugs are for uric acid issues. There are also other medication to help with uric acid. Are you also doing a kidney friendly diet?

uloric.com/

[Done4Kidney in reply to Bassetmommer]

Hello Basset!

Thanks for the reply!

I know my name may sound sad but I actually find it funny. I enjoy a bit of morbid humor- helps alleviate some of the fear and stress.

I have not been put on any other uric acid reducers; this is my first go on one.

This is good to know. I will talk with my Dr and see if there is any other possible candidates for its replacement. ... really don’t know why this dr doesn’t tell me things like this.

Diet is hard but I am make slow progress. Avoiding protein and sodium. It’s frustrating that food becomes poison.

[Bassetmommer NKF Ambassador in reply to Done4Kidney]

HI Done4.... I get it and it is sort of clever.....

Attitude is what will get you through the tough days. I am not pollyannaish, and I have days that no one wants to be around me.

But for the most part I pick up my sorry a$$ and move on.

Food is not poison. It is the giver of life. It is energy. In my family, food is love. And it sucks when you can't eat what you want any more. After I mourned the loss of freedom to cook, bake and eat what I wanted, I started to look at it as a challenge. Now I find it fascinating to learn and experiment with things that are good for me.

You have a lot of challenges in you life. Be a warrior. Teach others what you learn and share your life to help others.

Hang in there, we are here for you.

[WYOAnne NKF Ambassador]

If you are concerned about ULORIC you need to discuss this with your doctor. Have you tried ALLOPURINOL? I know if your uric acid is high not only can it cause gout, but can also damage your kidneys more. There may be a reason your doctor put you on the ULORIC...maybe he has had more success with this one. The important thing is to get the high uric acid down to normal levels.

[Done4Kidney in reply to WYOAnne]

Problem with asking him is he’s only in the state/nation once a month. Living in Idaho there are not any other nephrologist I can see without traveling out of my insurance’s network

And I’ve already answered that question in reply to Basset

[WYOAnne NKF Ambassador in reply to Done4Kidney]

Can you call his office where he comes once a month? Talk with one of the nurses and maybe they could reach him and have him call you back when he is able. I would track him down anyway you can, especially since you are concerned. Remember to be your own advocate! Anyway, this is what I would do.

[Done4Kidney in reply to WYOAnne]

I have tried but I think their phone system is down lol talk about poor luck really... anyways yeah you’re right I will get a hold of the office and see if I can talk with a nurse. Hopefully before too much longer but as for now I have stopped taking Uloric as it has caused some chest pains I am not fond of

[WYOAnne NKF Ambassador in reply to Done4Kidney]

Make sure you tell the nurse about the chest pain and you stopped taking Uloric. Maybe it will help her to get a hold of the doctor sooner, rather than later!

[JimVanHorn]

When I had high uric acid I found that gravy was my problem. Meat dripping have purines from inside the meat and then the gravy is concentrated purines. Any meat drippings will cause it, so stay away from the bottom of the roaster!

[Done4Kidney in reply to JimVanHorn]

Interesting - I have been trying to eat healthier but perhaps it might be related to my diet.. perhaps something is not mixing well with it. Thanks for the insight!

[5157]

I have been on Uloric(prescribed by my rheumatologist)for several years for chronic gout. I have not had any problems .I do get labs every 6 months .