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Hello all.
I've noticed some people saying that their FSGS is in remission after having the disease for X amount of years. My question is, was it after being on a certain drug therapy or did it accur naturally?
Thanks for any feedback
Allan
High cholesterol Surgery CellCept Lipitor Cyclosporine Allergies Proteinuria Azathioprine Pneumonia Dialysis Prednisone Edema Enalapril Obesity
Hi, my son is in remission for 15 months now. He went into remission because he was given rituximab, he also takes cellcept. The first time he was given rituximab he took no other medication but relapsed after six months so they gave him rituximab again and started him on cellcept to keep the remission longer, seems to be working.
Good luck.
Thanks for the reply and I'm glad to hear that your son's FSGS is in remission. I'm curious though, if anyone has gone into remission without the drugs?
Al
I've heard it's possible (our neph has had one recent experience of it). But of course you'd never know if it was going to come back.
At the other end of the spectrum my daughter has never come close to remission and, bar enalapril, is currently drug free (she's exhausted all other possibilities). Five years after diagnosis, and despite spilling 3 plus every day, she still has normal kidney function, normal blood albumin, normal blood pressure and no oedema. To all intents and purposes she's 'normal'. Go figure...
I am currently in remission after 5-6 months prednisone therapy. Funny thing is that I just switched nephrologists and primary care physicians. I only had copies of my treatment/lab results from when I started pred.
My new doc gave me copies of all records from the beginning and it looks like my body was trying to cure itself before the pred. My protein levels were going down on their own continuously since the first onset or sign of illness. I can't believe I was never told this in the beginning, but was told that I was spilling buckets and needed steroids (which destroyed my body to this day).
I guess I learned a valuable lesson--if I could have had an alternative to pred or continuing test to see where the protein was headed prior to treatment. Glad I am in remission, but it looks like my kidneys were headed there on their own.
my son was diagnose with FSGS AUG./ 2007. The prednisone worked for him and he has been off prednisone now for almost 1 years. He is in remission and has been for the full 1 years. Praises to the GOD!
my son was diagnose with FSGS AUG./ 2007. The prednisone worked for him and he has been off prednisone now for almost 1 years. He is in remission and has been for the full 1 years. Praises to the GOD!
my son was diagnose with FSGS AUG./ 2007. The prednisone worked for him and he has been off prednisone now for almost 1 years. He is in remission and has been for the full 1 years. Praises to the GOD!
My neph told me I was in partial remission due to much lower protein levels in my urine and increased kidney function. He is going to check me in three months and if there is little to no more improvement then he will try me on cellcept or prograf. I am hoping that it doesn't come to that. I really dislike taking meds and the side effects, but I will do whatever it takes to try for complete remission.
I was "nearly" remissed for the past couple months. I was on heavy duty prednisone and followed up with cellcept (which did nothing for me). After a break from all the drugs, my levels were nearly normal. Now the proteinuria is back on the increase. But I've heard that no two people respond to any particular therapy the same. One course of treatment may not work as well as another. And then there's that magical combination that KO's the inflammation.
Hi carrie
Does your daughter suffer from any allergies?
When I found out I had FSGS I felt normal and no edema. My Dr. right away put me on 80mg Prednisone a day along with 25mg Cozar. The prednisone had no effect on my condition other than swelling my body up like a balloon, feel horrible, major mood swings, killing my energey and the list goes on! And they wanted me on this for 8 months...what are they crazy! I told the Doc's I'm done with the prednisone. I'm down to 15mg a day and starting to feel like a human being again. I truly feel that the prednisone killed part of me! My feet still have edema and the protein got worse. The doc's wanted to switch drugs right away, I told them I'm done with the drugs for a couple of months. I want to see where my levels are before we start the next round. By the way, the next drug they want to try is "Cyclosporine"
Al
None at all that we know of. And she's been thoroughly tested for food intolerance - nothing found. Why do you ask? I'm personally sure that allergies are significant - that's why we've been looking so hard!
I'm in the process of tapering down off of prednisone. I was diagnosed last August. I waited about 1.5 months after first seeing symptoms of FSGS before going to the doctor, hoping that this would just go away naturally. I started with swollen feet, and by the time I went for treatment I had 20 lbs of swelling (in addition to an extremely high heart rate, blood pressure, and cholesterol). So no, I don't think mine was going to go away without medication.
it would be great if we could get a panel of Neph doctors to come on here and have a group question and answer session. My Neph doctor said that there is no remission for secondary fsgs and I'm hearing people here say they are in remission. It's frustrating as all get out to not know if this is pipe dreams of getting better or fact.
I have invited all of my doctors to join this website. I don't know if they have observed any of the activity yet, but I will ask at my next visit in July. I agree that if we can get enough of these doctors here and get them communicating then we will have a better chance at success and remission.
I was diagosed with Ns back in 2006, nothing worked for me,I was on predisone for 2 years 150mg. My doctor tried azathioprine for 18 months and it worked. I have been on remission for the 2 years. I have side effects of the predisone that I am battling now.
150mg a day? OMG and I thought 80mg was bad. I'm weaned down to 5mg a day now. I'm still holding water, my skin feels like it's on fire, trying to get my strength back and have some nice rings around my eyes that I never had before I started the prednisone! People might get the wrong impression, but if I have to be sick from the drugs to live, I don't want them! I'll do my best with diet, exorcise and a positve attude. That's wht I started this post, I was currious if anybody has beat this without the drugs? I hope the prednisone didn't cause any permanent damage to you. Good luck.
Al
I was in a bad way when I was diagnosed in 1994 and have been in and out of remission ever since - usually around 18 month cycles. I've always thought it was my existing strong will, positive attitude, good diet and yoga regime that tipped the scale in my favour to go into remission the first time - they only gave me 10% chance of that initially. I was determined that would be the end of FSGS and was devastated when it came back the first time. 15 years later and although I'm on a permanent 5mg now, at least I'm still here. I've tried all sorts of cures but the only thing that stops it for me is the Prednisone. I don't get fat on it any more but still have to warn everyone I'm about to go crazy again. I'm so tired all the time that when I relapse the only positive thing I look forward to is the burst of energy I get from the 80mg of Pred. I plan energy hungry things to do to make the most of it. Every cloud has a silver lining. Good luck
My husband is in remission after using Prednisone (he has Primary Idiopathic non-collapsing FSGS). The nephrologist has kept him on 5 mg every other day of Pred to keep him in remission. He relapsed once after going off the Pred entirely.
Maybe he's unique, but the Pred doesn't bother him. He's lost his weight from the 120 mg Pred days (immediately following diagnosis), he's exercising, and sleeping well.
There are long term side-effects from Pred, but nothing as dramatic as kidney failure and transplantation. I look at it as the choice between two evils. I'll take the Pred (and thank my lucky stars that his FSGS responds to that).
I'm with the ones that hate Pred....it did nothing for me. They had me on 40mg for 2 years then took me down to 20, the `0 then 5 then 5 every other day until I stopped it this past August. While on this I was also on Cellcept. The Cellcept continued until just a few weeks ago when I took myself off. Why can't we heal ourselves from this? There is something going on. When I stopped the Cellcept - 2 weeks later - I accidently cut myself. As you all know we take up to 2 weeks to heal. Well this time my cut healed in 5 days!
Being immuno-suppressed doesn't make sense to me. If our bodies can't heal why are we being suppressed? I want to heal...I will continue the BP and cholesterol meds because they helped me. But all the other crap can wait until I figure out why we have to take it.
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