C1q nephropathy

[Deb C]

(Topic from archives: Originally posted 14:20:07 07:59:54 08/09/2003)

My niece has recently been diagnosed with C1q nephropathy. The Urologist is not offering much information at this time. We would like to be proactive with this and wondered if anyone has any experience with this disease. Thanks for your help.

[Beth Witten]

You might want to ask to speak to a nephrologist. A nephrologist specializes in diseases of the kidneys. These are some questions I'd ask:
1) What does this diagnosis mean in layman's terms?
2) What is the treatment and how successful is it?
3) What is the course of illness for someone with C1q nephropathy and how will it affect length and quality fo life?
4) What causes/prevents this disease?
5) Is it heriditary?
6) What other conditions go along with this diagnosis (repeat #2-5)?

I looked for patient education resources on this specific condition and didn't find any. I found something on minimal change disease (C1q nephropathy apprently is one of three times types of MCD). This looks like it was written for professionals: http://author.emedicine.com/MED/topic1483.htm

You might want to print this, read it, and show it to your doctor when you ask your questions.

[Misty M.]

I'm going to be 22 in December. I found out I had it when I was 15. They had even less Information when I was diagnosed. I was actually hoping you could possibly send me any info you might have please send it to me. My e-mail address is: princessbeowolf2@AOL.com. Thank you for your time.
Sincerely,
Misty Miller

[Beth Witten]

Although we don't have anything specific on this particular diagnosis, Life Options (http://www.lifeoptions.org) has several booklets on living with kidney disease, all of which are available online. Look for "free materials" to read descriptions of the booklets. Some are available in print and there is a link to the order form on the free materials page.

You might also find information that will help you on our Kidney School (http://www.kidneyschool.org) web site. You can pick and choose from a number of educational topics there. This web site is interactive, taking your answers and giving you information specific to your case. No information about you is stored on this web site.

There are a number of other organizations that have free or low cost materials on kidney disease. Check out the links page for topics and follow the links to the different organization web sites.

[ZachAlex]

[quote="Deb C"](Topic from archives: Originally posted 14:20:07 07:59:54 08/09/2003)

My niece has recently been diagnosed with C1q nephropathy. The Urologist is not offering much information at this time. We would like to be proactive with this and wondered if anyone has any experience with this disease. Thanks for your help.[/quote
My grandson has this , have you learned anything about this? Thankyou Syl H

[ZachAlex]

I'm going to be 22 in December. I found out I had it when I was 15. They had even less Information when I was diagnosed. I was actually hoping you could possibly send me any info you might have please send it to me. My e-mail address is: princessbeowolf2@AOL.com. Thank you for your time.
Sincerely,
Misty Miller Dear Misty My grandson has this. Have you learned anything more about this disease since 2003?? Syl H

[Beth Witten MSW ACSW]

I found a recently published study on C1q nephropathy in children on PubMed (www.ncbi.nlm.nih.gov/entrez/). From this small study, it appears that those children that had nephrotic sydrome (protein in the blood, urine and swelling) were more likely to have kidney failure later than those that didn't have nephrotic syndrome. Here's the abstract of the research:

Lau KK, Gaber LW, Delos Santos NM, Wyatt RJ. C1q nephropathy: features at presentation and outcome. Pediatr Nephrol. 2005 Jun;20(6):744-9. Epub 2005 Apr 13.

Children's Foundation Research Center, Le Bonheur Children's Medical Center, Memphis, TN 38103, USA.

The study population comprised all 20 patients followed since 1990 through December 2004 at the Le Bonheur Children's Medical Center with diagnosis of C1q nephropathy (55% boys; 60% African Americans). All were aged under 18 years at biopsy (mean 11.2 years, 65% aged 11 or over); the youngest presented at age 10 months and progressed to end-stage renal disease at 14 months. None had clinical or laboratory features of systemic lupus erythematosis or membranoproliferative glomerulonephritis. Clinical features assessed at diagnosis were age, gender, blood pressure, history of macroscopic hematuria, urinary protein to creatinine ratio, serum creatinine, estimated glomerular filtration rate, renal histology, and pattern for immunofluorescent reactants. At the time of biopsy 40% had nephrotic syndrome and 30% nephrotic range proteinuria without nephrotic syndrome. Three patients with nephrotic syndrome also had chronic renal insufficiency at diagnosis. The most common histological feature was focal segmental glomerulosclerosis in 40%, but 30% had minimal change lesion. Four patients, all with nephrotic syndrome at diagnosis, progressed to end-stage renal disease. Of the 12 patients not presenting with nephrotic syndrome, none had chronic renal insufficiency at last follow-up. Kidney survival was 94% and 78% at 1 and 5 years, respectively, in all patients and 88% and 49% in those presenting with nephrotic syndrome.

Here's a brochure on childhood nephrotic syndrome:
http://kidney.niddk.nih.gov/kudiseases/pubs/childkidneydiseases/nephrotic_syndrom/index.htm

[ZachAlex]

I'm going to be 22 in December. I found out I had it when I was 15. They had even less Information when I was diagnosed. I was actually hoping you could possibly send me any info you might have please send it to me. My e-mail address is: princessbeowolf2@AOL.com. Thank you for your time.
Sincerely,
Misty Miller Dear Misty My grandson has this. Have you learned anything more about this disease since 2003?? Syl H

To those out there with C!Q nephropathy. My grandson was put on Ace inhibitors about 7 months ago. It has greatly reduced the protein in his urine and seems to work against C!Q. Hope this is helpful to others Syl H

[chlora.green@cox.net]

(Topic from archives: Originally posted 14:20:07 07:59:54 08/09/2003)

My niece has recently been diagnosed with C1q nephropathy. The Urologist is not offering much information at this time. We would like to be proactive with this and wondered if anyone has any experience with this disease. Thanks for your help.

a am scotty ehrhart i am 22 i have had c1q nephropathy since about seven years old i dont know much but i know a little my phone number is 405-422-9018 i live in oklahoma

[DoriSchatell]

Thanks for your willingness to share your experiences, Scotty. I'm sure folks will appreciate that.

[Unregistered]

September 15, 2008
My 2 year old son was just diagnosed with C1Q Nephropathy after an original diagnosis of Minimal Change Nephrotic Syndrome (confirmed C1Q after a biopsy). If any of you have infomation for parents dealing with this specific type of Nephrotic Syndrome please email me - or if you are a parent with a child with C1Q or you have C1Q I'd love to hear from you. (I live in Canada)

Shannon
valentine@harewaves.net

[bashful1]

September 15, 2008
My 2 year old son was just diagnosed with C1Q Nephropathy after an original diagnosis of Minimal Change Nephrotic Syndrome (confirmed C1Q after a biopsy). If any of you have infomation for parents dealing with this specific type of Nephrotic Syndrome please email me - or if you are a parent with a child with C1Q or you have C1Q I'd love to hear from you. (I live in Canada)

Shannon
valentine@harewaves.net

Hi Shannon, My name is Holly. I'm 43 and I have c1q nephropathy. I haven't been given too much information on it either but I am being treated for it and my doctor said I am getting better. He has me on a lot of medicine and routine blood work. It is tough to remember everything but it will be the only way I will get better. If you would like to email me and have someone to talk to my email address is Holly022@aol.com. Take care, Holly

[Unregistered]

I'm 26 and just found out that I have it. They started me on steroids and and tons of other medicine trying to find more info. contactact karinkak2004@yahoo.com I want to know more about what we have and there just isnt any info

[DoriSchatell]

Hi all,

I'm sorry you've been having such a hard time finding information about C1Q nephropathy. I have to admit that I'd never heard of this, and it is, in fact, rare. But there are ways to look for information about rare diseases:

1. Put the search term into Google. If you put "c1Q nephropathy" into Google, 16,400 pages come up, and you can get a very good sense of what it is and how it works.

2. Search the published medical journals (PubMed). These days, anyone can go online (you found your way here!) and search the peer-reviewed published medical journals here: http://www.ncbi.nlm.nih.gov/sites/entrez These articles are going to be in medical jargon, and they can be hard to plow through, but when you're motivated (and you can look up words you don't understand online, too), you can learn a lot of useful things.

I did a PubMed search, and the first article I found said that C1Q is mainly found in children and teens, a little over half of people respond to steroid treatments (and many of the rest to chemotherapy drugs), relapses are likely, and in that particular medical center, 100% of the patients' kidneys survived.

3. Look for who writes the paper. Doctors have different specialty areas, even within a specialty like nephrology. On the article I found, the lead article was Dr. Maria Roberti, a pediatric nephrologist from Livingston, NJ. (http://www.ucomparehealthcare.com/drs/new_jersey/nephrologists/Roberti_Maria.html) Perhaps your doctor could contact her or another expert you find by looking at who has done research into your illness.

These tips can be used for ANY disease, and I hope they help you.

[Unregistered]

Hi there again
My original situation (from my original post) has now multiplied x2. My first son was diagnosed with C1Q in September and now his twin brother is showing the same symptoms. We are set up for a biopsy in the next couple months to verify. Our doctors are looking into the genetic side of it now too. If you have any info to pass along to me and my family I would appreciate it.

Shannon
valentine@harewaves.net

[Unregistered]

I am 40 years old and was told that I have C1q. Is there any adults who would like to talk about treatment and this disease?

[Unregistered]

My 28 year husband was just diagnosed with c1q about 1 month ago. It was that we applied for life insurance and he got denied was the way we found out about it. It is without a doubt a severe disease to have, but there is a lot of hope too. I have been tring to learn about it. My husbands kidneys are only working about 29% and the protein levrl in his urine is about ten percent the normal amount. His creatinine clearance is between 2.7 to 3.7. He was put on steriods, and antibiotic, and high blood pressure medication. I t has been life changing, but I have some clients that are doctors and the have been able to guide me to good doctors and what questions to ask. He is also on a 60g/day protein diet.
It has been hard we have a seven year old and an 11 month old, but I have been told and have read that most times than not the treatment stablizes the kidney function and possibly improves it. Our Nephrologist told us that they know for sure that his kidneys will never be normal but it is very likely they will stabilize and not have to have dializes and or a kidney transplant.
keep optimistic and research, seek help emotional and medical for the disease

[Unregistered]

Hi, my name is Shanti and I was diagnosed with C1q when I was 10 years old, I am now 15. It was found during a routine physical from the urine test. I had never shown any symptoms and the doctors said that we caught it very early. After the biopsy confirmed it was C1q I was started on high dose Prednisone (Steroids). On the off-chance that it could be put into remission we tried Cytoxan for the limit of 3 months. No luck. However, I was responding to the steroids pretty well and tested my urine at home everyday and got full blood and urine labs done once a week. I was briefly put on Cozaar for my high cholesterol until it was decided too risky because I was not yet menopausal. I was also taking Enalapril. Although I was responding well to the Prednisone/Enalapril combo I was extremely inflated due to the Prednisone. I was also experiencing mood swings, insatiable hunger (I went from 75-95lbs in 2 months), and obsessive organization/productivity. I was on Prednisone from ages 10-11.5(when I was successfully weaned). In weeks the side effects from the prednisone had gone away and I was back to around 85lbs. In place of the Prednisone I took Cell-Cept, which I like to call the miracle drug. I have taken Cell-Cept and Enalapril from then on and am currently taking 1000mg of Cell-Cept at 5am and 5pm (on an empty stomach) and 15mg Enalapril at breakfast, 10mg at dinner. I have practically no side effects (aside from occasional dizziness), self test my urine about once a month, go in for full blood/urine labs about every three months, and go to the nephrologist twice a year. I probably lost an inch of height from taking the Prednisone but I am currently 64.5 inches and still growing so it doesn't really matter. I would say that my treatment for C1q has been successful and hopefully with its continuation I will never need dialysis or a transplant. I wish everyone the best of luck and feel free to contact me at omshantimarie@me.com, I will do my best to help.

[DoriSchatell]

Hi Shanti,
Wow, I'm impressed at how knowledgeable you are about your kidney problem and its treatment--you're really staying on top of all of the details. I wish the adults we work with were as conscientious as you've been! It's the best way to ensure the best outcomes possible.

[Unregistered]

Why, thank you! I agree that staying informed really makes a difference.

[Unregistered]

My doctor told me c1q nephropathy is the first stages of fsgs.. The same thing alonzo morning had. I just started steroids. Lets see if they work.