Tacrolimus for steroid-resistant nephrotic syndrome

[Cbu523]

Hi! My five-year-old son was just diagnosed with steroid-resistant nephrotic syndrome after taking steroids for 8 weeks. Our next step is to try tacrolimus but we are nervous considering a possible side effect is kidney damage. Has anyone had any experience with using tacrolimus in treating steroid-resistant nephrotic syndrome?

[TakTmkMrk]

We’ve learned that with every form of treatment there are consequences. You learn to weigh the pros and cons. For us,The negative impacts of being on steroids for an extended period of time by far exceeded any possible negative impact Tacrolumus has on the kidney. I would suggest you talk to your nephrologist and have specifically and in detail lay out the pros and cons. And it never hurts to seek a second opinion from a hospital not affiliated with your current hospital. Each institution has their own preferences and practices It’s your right to seek the best care you can for your child. If you have logistical problems seeking a second opinion you can reach out to NKF for guidance and suggestions on how to get the info you are seeking. NKF has an abundance of information, contacts, and relationships with organizations and people that can help give you unbiased answers to questions.

[Cdrago]

Hey there! My six year old also has steroid resistant nephrotic syndrome and her nephrologist had us do a biopsy prior to choosing a second line medication.

Curious if you guys had one and which medications you are using now and if they are helping!

[Cbu523 in reply to Cdrago]

We have been on tacrolimus since February but he is not improving and is starting to eliminate even more protein. We are scheduling a biopsy in May. I’m not sure where we go from there. Which medications have you all used?

[Cdrago in reply to Cbu523]

So we ended up adding enalapril to keep her blood pressure low but never added a second line medication. We have reduced her steroids to every other day and are hoping to see results in 6 months instead of 6 weeks. Her biopsy showed IgA Nephropathy are the cause of her nephrotic syndrome as opposed to MCD or FSGS.

But even with this plan she is spilling an incredibly high amount of protein daily so we have not ruled out a 2nd line medication just yet so I am still researching them and have an appointment with a dr who specializes in IgA to get a second opinion on her treatment plan.

Where are you guys located?

[Cbu523 in reply to Cdrago]

I am hopeful the biopsy will give us more information. Our nephrologist is fairly certain it is either MCD or FSGS and so he figured it wasn’t worth doing a biopsy since he would prescribe the same treatment for either. But now he’s on board with proceeding with the biopsy.

We are in the Chicago suburbs but our nephrologist is out of Lurie’s Children’s Hospital in Chicago. After we get information from the biopsy we will start looking for second opinions. Where are you located?

[Cdrago in reply to Cbu523]

We are just outside Charlotte, NC and I always wonder about the different approaches in other areas of the country. I am grateful for being in a larger city with a great children’s hospital for sure as well as several research facilities up by Raleigh, NC.

Post biopsy is where we are looking at another opinion too. If for no other reason than their age. I feel like because they are so young it’s super important to get them started on the right treatment plan and know our options.

I would love to chat more and share details about our journey and see if we have anything in common. Always looking to learn more from others! Are you in any of the nephrotic syndrome facebook groups to ask questions there as well?

[Cbu523 in reply to Cdrago]

I would love to chat more as well. Sometimes we feel in the dark since we do not know anyone experiencing this and we don’t have any family history of kidney disease. Are there any Facebook groups you recommend?