Light Chain Deposition Disease is a rare disorder in which the monoclonal sFLC accumulates within cells in the kidneys and other organs.
|Edema||Edema is an abnormal accumulation of fluid beneath the skin or in one or more cavities of the body.|
|High blood pressure||High blood pressure that is often hard to control even with medication|
|Nephrotic syndrome||Nephrotic syndrome is a nonspecific disorder in which the kidneys are damaged, causing them to leak large amounts of protein from the blood into the urine.|
It's a conjecture, but quite clearly the prednisone helped both maintaining kidney function or more accurately slowing down decline in kidney function and perhaps reducing light chain production. We saw quite clearly that after stopping the low dose prednisone, kidney function deteriorated more quickly. WAe also saw over time a decrease in light chain production. Re. the latter one can't know if it was the course of the disease for her or it was the result of the low dose prednisone. So the doc don't really know why it helped, we know it is very likely that it helped. The program at Boston University is another place to consult in addition to the Mayo. I hope this is helpful Best luck
Would like to see more activity here...but I guess the LCDD is pretty rare. My 76-yr-old hubby was dx with LCDD a little over a year ago after a high creatinine reading during a routine physical. The sad thing is that the reading had been elevated the previous year and the doc did not notice nor follow up. A year ago he tried velcade (major neuropathy) and then melphalan. His light chains dropped considerably but are rising again. The Onc's opinion was that his disease will not affect other organs...and since the kidneys are already non-functioning, they discontinued the chemo. As I mentioned a year ago, he's lost his kidney function and is on hemodialysis. We visited Mayo in Rochester and their review was "nothing can be done except dialysis". He is too old for stem cell. And a transplant is out of the question due to lcdd. He has one plus. He is able to still pass urine so it makes the kidney diet a bit easier. Barber, What was the reason (and the benefit) for the low dose prednisone? To help the kidneys continue to function??? Thanks for any response.
Sorry to hear Blondie. Very sinilar to what happened to my wife, as I wrote earlier dexa folllowed by low does prednisone was sufficient to help her for the last 10 years. The data indicates that Velcade should be very helpful. Best luck
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.
Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.FIND YOUR COMMUNITY
Our rare disease resources include e-books and podcasts
Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.