Help for C1Q Nephropathy

[ZachAlex]

I would just like to say for those out there with C1Q Nephropathy. My grandson has been on Enalapril for almost a year now and the protein in his urine has dropped from 0.31 to .2 I just wanted to point out to people looking for information on this rare kidney disease , this medication is helping him hold on to his kidney functon. I sure hope this helps someone Sylvia Healy ZachAlex

[Beth Witten MSW ACSW]

Thank you for keeping us up-to-date. Glad to hear that his medication is working.

[lydcam]

Reading the posts on C1Q Nephropathy, the ACE inhibitors and Enalapril are both High blood pressure meds, and not usually directly related to treating C1Q nephropathy.

My son is 7 and has been diagnosed with C1Q since Fall 2003. Treatment for it has been attempts to find a drug among a series of Rx's and even a combo of them. He began with Cellcept, then moved to Cyclosporin A, and is now taking Tacrolimus. Each is a drug used to regulate kidney function, and common in use with transplant patients. In addition to one of these types of drugs, patients are usually treated with a HBP drug, as hypertension is both a condition of kidney disease and a side effect of some of the drugs.

The other thing to look for is high cholesterol. As a patient has had the disease for a while, there is sometimes a marked increase in cholesterol, as the liver begins to crank up in response to the low protein in the body. My son seems to be less tolerant of cholesterol drugs, so he takes high-grade Niacin and plant sterols to help with this - his cholesterol was a high of 900 before treatment and now is around 300.

I'm very interested in hearing from people who are undergoing treatment for C1Q as to what is working best.

[ZachAlex]

I would just like to say for those out there with C1Q Nephropathy. My grandson has been on Enalapril for almost a year now and the protein in his urine has dropped from 0.31 to .2 I just wanted to point out to people looking for information on this rare kidney disease , this medication is helping him hold on to his kidney functon. I sure hope this helps someone Sylvia Healy ZachAlex

This is 2008 and my grandson is still on the same dose of Enalapril. he is 10 years old and is still doing great . All his numbers are perfect. This treatment is not a cure but sure has helped him. Sylvia Healy Zach Alex

[Beth Witten MSW ACSW]

That's great news! Thanks for the update.