My daughter

[Vik95]

My daughter was diagnosed at age 14 with MPGN. She is now almost 23. A few years ago after a 2nd kidney biopsy, her diagnosis was changed to C3g. She was on lisinopril for years and in medical remission but developed a severe cough as a reaction to the lisinopril. She was switched to losartan. She takes it daily which lowers the proteinuria. Her specialist in NYC wanted her to go on steroids and immunosuppressants a few years ago but being of age she refused due to the known side effects and due to the uncertainty of being helped by this harsh medication regimen. She still spills a lot of protein and takes 50 mg of losartan daily. She cannot tolerate a higher dose as her blood pressure is very low from the losartan. Her kidney specialist is one of the doctors running one of the clinical trials and suggested it for her as her kidneys according to her labs are functioning normally. But I have major concerns about my daughter taking meds that haven’t been proven to stop this diseases. She also battled GI issues and has just gotten that on track through a gluten and dairy free diet. Also low sugar diet. I am thankful that this group exists because there is no one to talk to about this rare disease. The articles on the website do not give an encouraging outlook. I’m holding on to time and hope that tried meds will be on the near horizon for all those affected with C3g.

[DavidF_NKF Partner]

Hi Vik95, It's great to have you in the community- thank you for your post. It sounds like your daughter has gone through a lot. I understand why she has resisted steroids. In case you don't know, NKF is sponsoring a webinar on clinical trials for C3G drugs- please see my post below for more information. I hope you stay engaged in the community!

[Vik95 in reply to DavidF_NKF]

Will definitely stay engaged. We need each other!

[skieryooper1999]

Hi Vik95 I have Dense Deposit Disease. I am on Prednisone 40mg everyday at the moment along with weekly Solumedrol infusions. I was diagnosed December 2016 so not that long ago. I'm 19 years old and I take these to lower my proteinuria. For me, the side effects of the steroids have mostly been just weight gain which has been really hard on me ,but I've been recently counteracting it with an anti-inflamatory diet and more exercise. Being on these steroids has been really successful but I know the side effects can drive a person away.

[linfuller Ambassador]

Welcome to the community! I completely understand the hesitation with drug trials - it can be a scary prospect to face. At the same time, it is often the best, or only, way to get the most effective treatments. It is very difficult to get drugs approved for C3G not necessarily because they don't work, but because there aren't very many patients who can participate in trials. The more people who participate, the better the chances are of one day getting an approved treatment. So even though it is scary, it may be in our own best interest long-term to participate. How does your daughter feel about it? It might be helpful to start a discussion about patient experiences with drug trials, so you can hear about the benefits and drawbacks firsthand. Sometimes the unknown is the most frightening part.

I've never been keen to start prednisone, for the reasons you state - side effects, long-term effects, and little evidence that it is effective. Thankfully, my doctors have been equally hesitant to go that direction. I am currently on eculizumab, which is not approved for C3G. However, it has greatly increased my kidney function and reduced my symptoms, with very few side effects. It was scary to take that step, but losing my kidneys was an even more frightening prospect. I'm so glad I did it, and so glad my doctors took the chance on it - sometimes the benefits can outweigh the risks. I hope you'll check out the webinar, and that you'll find this to be a place where you can interact with others who share your struggles. We are glad to have you here!

[DavidF_NKF Partner in reply to linfuller]

Hi Lindsey, Thank you very much for this thoughtful and important reply. I am especially interested in your suggestion to start a discussion on experiences in drug trials. I hope we get some chatter around this topic.

[Vik95 in reply to linfuller]

Hi Lindsey,

How are you doing? My daughter is very reluctant to try a clinical trial as she has been experiencing GI issues for the past 3 years. After so many tests and no answers except slow motility, she has taken a holistic approach to help her gi issues. Very strict diet, no gluten, no dairy and low sugar. Helps but her gi tract is not normal. I think it’s a by product of C3g. Do you or know of anyone who suffers from gi issues that also has C3g?