I know this may seem elementary but I am just not getting it. I guess our recent understanding is that if the kidney tissue is scarred (FSGS), it is permanent and can't be reversed. If the damage can't be reversed then how do these meds (blood pressure for improved kidney function and prograf for immunospressing), make a difference on the kidney function. How does one go from low kidney funtion (I'm assuming that means a high percentage of scarring) to near normal without reversing the disease process? Our neph told us that he most likely would always leak protein (he has 15% scarring now) but we needed to prevent further damage and decrease the amount of protein loss out of his blood system. I guess we just aren't understanding how that happens, if he has an albumin of 1.8 now with lots of swelling, short of the holes repairing/reversing. Any help would be appreciated!
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What does remission really mean?
- By SoaringHigh
- Posted October 21, 2009 at 12:29 pm · 7 replies
- In Children with FSGS
- Shared with the public
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CellCept Cyclosporine Nephrotic syndrome Aspirin Allergies Dialysis Cytoxan Prednisone Edema Depression
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- By JaiJai
- Posted October 22, 2009 at 8:38 am
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I was diagnosed with FSGS this past August and to my understanding FSGS (unlike some other types of kidney disease is irreparable.) Once the damage is done it is done and there is no reversing it. Ace inhibitors (blood pressure meds) help to slow down the progression of kidney damage and I've read in some cases, not sure how likely, can stop further damage. Ace inhibitors also help decrease the amount of protein lost in urine. But like you there are still some things I don't quite understand about this disease, and sometimes I think the doctor's don't know much about it either. Hope this was helpful!
- By Mika
- Posted October 23, 2009 at 10:07 am
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Hi. My son was diagnosed with FSGS two and a half years ago when he was 13 months old. I still do not know everything and also it seems that this disease is not the same in all people so other people will have different experiences and opinions then me. When it comes to medications, people with kidney disease need to be on blood pressure meds because kidneys help to control blood pressure so if they are not working properly then you get high blood pressure and that can lead to other problems. Also, if your son has swelling then he should be on blood thinners (some people take aspirin, but talk to your doctor, other meds might be better for a child). When you have edema your blood becomes thicker and that can lead to blood clots. My son had one on the lung, he was very sick but fortunately recovered, however there was someone on this forum who's child died because of a blood clot.
As far as the remission, it is possible, my son has been in remission for a year and a half now and has been in remission for six months before that.
The scaring of the kidneys is not what starts the protein spillage, the scaring is a result of the protein spilling. Once you have scaring it is not reversible and, like your doctor said, he will probably always spill some protein, but he can still go into remission. The scaring is not the only thing that causes low kidney function (people with MCD have no scaring but their kidney function can go down if they do not go into remission). My son does not have much scaring (when in remission he spills no protein) but while he was sick his kidney function was down to 60%, which is still not too bad. Now his kidney function is normal, 100%. In a lot of people FSGS is caused by the immune system attacking the kidneys and causing them to leak protein which leads to scaring (that is why immunosupresents work for some people). When my son first got sick he was put on prednisone but because he was very sick (had to be hospitalized the whole time and had many problems) and was not responding to prednisone, they did the biopsy and diagnosed him with FSGS. He was put on cyclosporine but had a bad reaction to it and it had to be stopped. That really limited what could be done because they said that anything similar to cyclosporine will cause the same reaction (that includes most of the drugs used to treat FSGS). Most of the doctors at the hospital wanted to remove his kidneys because they said that the edema was killing him and nothing worked to control it, he was getting albumin three times a day and it did not help. But fortunately it was decided to try rituximab (which at the time was very new to the treatment of this disease). Rituximab destroys all the B cells in the immune system. That worked very well and in a couple of months it was as if he was never sick. However after six months his B cells were coming back and he relapsed. We did not wait long and he got another dose of rituximab which put him back in remission. He was also started on Cellcept in order to keep him in remission longer and it worked.
Now , like I said, everyone is different and not all medications work for all people but if your doctor can find a medication that will work for your son then the progress of this disease can be stopped and he will be able to live a fairly normal life and keep his kidneys. No one knows what will happen in the future and I also do not know how my son will be long term but I try not to think about it much because it drives me crazy, I try my best to live for today.
- By SoaringHigh
- Posted October 23, 2009 at 10:20 am
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Thank you so much for taking the time to write this out and share your thoughts! It makes much more sense to me now. It sounds like your little fellow has had a very rough time! I am grateful that he is in remission and that things are better for you now. Today I'm just fearful after seeing mine so weak yesterday. I had to pick him up early from Jr. High again because he had no energy. I see him feeling so bad and there is nothing physical I can do to fix it. I don't know if his electrolytes are off, if its the low blood albumin (his last 24 hour urine showed 1700mg) or its some depression. And I don't know if the doctors can do anything right now but wait on the meds to work.
The blood clots were mentioned to us and that itself scares me badly. I'm trying to be aware of that possiblity when he has trouble breathing, leg cramps etc. Anyway, I do appreciate you and wish you the best. I'm passing your note along to my husband:)
Kerrie
- By SoaringHigh
- Posted October 23, 2009 at 10:32 am
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So really you're saying that the kidneys start spilling protein because of the FSGS. Eventually that protein causes scarring that is irreversible. The meds will help stop the protein spilling but don't fix the scarring. But if we slow/stop the protein spilling we can prevent further scaring? When you say kidney function can you tell me what constitutes low functioning that does not involve protein spilling. For our son his BUN/Creatinine levels have been ok so far. Sorry for all the questions and thanks for any more help!
- By Mika
- Posted October 23, 2009 at 3:17 pm
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Sorry that your son is not feeling well, it can be from the disease, the medication and just being depressed, probably a combination of it all.
I do not know how much scaring a person needs to have before they go into kidney failure. It does not sound like your son has too much yet, so if the protein spillage can be stopped then he wont get more scaring and his kidneys will function ok. I do not know what ales exactly causes the kidney function to go down when you have FSGS, but I do know of many people who had very low kidney function with FSGS and it came back up and since the scaring does not go away then there must be other aspects as to what decreases the function. People do not need a transplant till they are under 20% kidney function (not sure of the exact number), so even if your son has some scaring (which all people with FSGS have) then he can still be okay as long as you can get him into remission which will stop the progression of the disease. Like i said, my son was very sick (they told me he was one of the worst cases they have ever seen) but because we were able to get him into remission and keep him in it he still has very good kidney function and all his tests come out normal. I know that when you read on the internet it says that people with FSGS need a transplant in eight years, many in two to five years. But that is not always the case and some people have had their kidneys much longer, the only way to prevent your son from developing so much scaring that his kidneys will no longer be able to function is to find a way to get him into remission. A lot depends on the doctor. If your doctor is open minded and willing to try different things then your son has a much better chance. Some doctors are not willing to try new meds and feel that its too much of a risk to try. I know that our doctor saved my sons life. I also know that since ours son was treated with rituximab, our doctor has used it on one or two other kids and it also worked well. So there are some options out there, just need to find the right one.
- By rosearlene
- Posted November 18, 2009 at 9:40 pm
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From what my son's neph has explained, the protein spilling is not from fsgs. It is from nephrotic syndrome, which is a separate disease, but usually (always???) accompanies the fsgs.
My son was diagnosed 3.5 years ago, and is now 17 years old. When first diagnosed, he was on pred and responded immediately. He was in remission on pred, but the side effects aren't too fun. Then he was put on Prograf and Cellcept, and we were able to wean him off pred. He was pred free for 2 years, and in remission the entire time (only taking Prograf and Cellcept).
He would relapse here and there, but it would only be for a couple of days (when he got a cold, or allergies, etc). This last week, for some unknown reason, he relapsed, but this time he got edema and went into acute renal failure. His kidney function went from 94% to 49%. But the dr. thinks once he gets back into remission, he MIGHT regain his function (I hope so).
Right now, he's back on Prednisone and they just increased his Cellcept. They took him off Prograf, because evidentally that can be toxic to the kidneys (you have to have blood work done when on Prograf).
Anyway, the relapse isn't fsgs, it's nephrotic syndrome. Because fsgs causes scarring, and nephrotic syndrome causes kidney damage, the nephs treat the neprotic syndrome w/ prednisone, cellcept, prograf, cytoxan and all of the other meds you read about. There are no meds for fsgs. No treatment, no cure (yet). So any protein that is spilled would be from the nephrotic syndrome.
It's a LOT to learn, a lot to read about and can be frightening and confusing. Just focus on what works for your child; take it ONE day at a time, and try to stay positive :)
- By RosieC
- Posted November 19, 2009 at 6:16 pm
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Hi, the FSGS causes the nephrotic syndrome - protein spilling etc. Here's a good site that explains nephrotic syndrome - http://www.merck.com/mmhe/sec11/ch144/ch144c.html
I was 40 and pretty sick when biopsied but at 55 I'm still here with my own kidneys and no dialysis - just lots of meds. Nothing is certain but hang in there - staying positive is vital. I just love that we all help each other here.
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