a "cure" for FSGS?

Hi everyone -
I was reading some of your posts and thought I would join to share some info you might be able to use. I am 59 and have been diagnosed with FSGS for a little over 5 years. The first year was pretty awful - BP ran up to 230+, legs & left wrist swollen to twice normal (Edema), body weight up 50 lbs. Went down the usual paths with my nephrologist - prednisone, CSA, lasix, etc.
Well here's the good news! Somewhere 2 - 3 years ago after much research on web and much telephone conversation with 4 different clinical trial Neph's, I worked out a chemistry that seems to be working for me and I want to share. One of the keys for the Edema issue (and BP surprisingly) is Metolasone. I only needed 7.5 mg a day to completely stabize things along with twice a day lasix and the other meds. But the key for my "remission" if that is really what it is (time will tell of course) is the immunosupressants. For me, the magic mix turned out to be 500 MG Cellcept twice a day, and just 10 mg predisone once a day. My proteinurea is still way high, but my creatine appears to have stabilized, and all other dibilitaing symtoms have dissapeared. Here is another trick for anemia resulting from low red cell count I get (and so would you): I found regular iron supplements with vitamin C worked as well (maybe better) than expensive IV Venifer which you likely need outpatient hospital for. Seems I don't need Procrit injections near as often (I'm down to one evey six - eight weeks or so).
Talk to your Neph about this but keep a healthy cynicism - many doctors have a "pride of authorship" and don't want the patient telling THEM what to do. But remember - it's YOUR body and you life! Live well.

By Boussaar
Posted July 2, 2009 at 7:57 am
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Dennis, I was interested in your posting because from what I have read and what my neph told me, FSGS usually does not strick older people. I was 58 when diagnosed. I started swelling three months before my kidneys shut down. My neph used a combination of prednisone and cellcept and I was on the cellcept for 9 months. I have been in full remission for 15 months with 100% kidney function. I only take 5 mg of pred every other day. I do not have to use lasix at all any more. I started out with 60 mg of pred and this was cut back to 5 mg during the first 12 months. My neph thinks cellcept is the best treatment for FSGS for patients who can tolerate it and who repond well to it. I was one of the lucky ones and it sounds as if you are too. Hope you continue to improve.

By cgalitski
Posted July 2, 2009 at 8:33 am
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My son is also on 3ml cellcept twice a day. And just got bumped up to 80 mg. steroids everyday. Because he is starting to swell up again and his albumin in very low again. He is also spilling +4. He has FSGS.

By DennisD
Posted July 2, 2009 at 12:42 pm
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Bousaar - Well, we now have two success stories for this particular "cocktail". Others perhaps can take hope that something similar may work for them.

By DennisD
Posted July 2, 2009 at 12:50 pm
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C -
Understand that I am no doctor although I do have a graduate chemistry background and a world of research on clinical trials on FSGS. That said, I would ask you Neph about upping the Cellcept and dropping the prednisone. As you are probably aware, high does of prednisone have a laudry list longer than your arm of very bad side effects. I too started with massive prednisone (all the way up to 160 mg every other day. Yes, it brought my FSGS into check but was not worth the tremendous risk (diabetes, glaucoma, cardiac, etc, etc, etc). So we designed the Cellcept - LOW prednisone cocktail which has worked fantastically for me (and apparently for another gentleman who just posted here). If you son shows no reaction to Cellcept, I would really try to get the prednisone down no higher than 10 mg (5 mg may be right), particularly for your son's body weight. But again, ask your doctor. If he resists, get another opinion!!!

By cgalitski
Posted July 2, 2009 at 1:04 pm
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Thank you so much. I agree. Prednisone is terrible. I am actually thinking as we speak about a second opinion. My head spins every time we take a turn for the worst. He does fine on Cellcept. We go back in August. I'm hoping we get a better game plan on how to control this. I may be taking a trip to Children's Hospital of Montifiore in NY , for my second opinion. Thanks again.

By cgalitski
Posted July 2, 2009 at 1:07 pm
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My son also took Zaroxolyn. When his swelling got pretty bad. I think what triggered this episode now, is he just got the flu, and whenever that happens, he nose dives.

By mamagemini
Posted July 2, 2009 at 2:56 pm
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Cellcept does do so much better than Pred in my world it seems! I took 500 - 1000 mgs for over 3 years and my protein dropped from 17 to 7. I too was on 5 mgs of Pred there towards the end of weaning because it did nothing for me they took me off. It was the Cellcept that brought me down. I have been asked to get off of it for awhile to see how I can handle just BP meds and cholesterol meds. So far so good. IT has been a month and a half and no yuckies. My GFR continues to drop no matter what they put me on so me spilling protein and my GFR dropping they wanted to see what else we could try to stop the GFR.

By DennisD
Posted July 2, 2009 at 4:34 pm
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Bousaar - Can I ask, what is you creatine running now? Mine has been between 2 and 3 for the past 12 -18 months. Also, do you know what your proteinurea level is? Mine never dropped much (except when I was extreme levels of prednisone) staying around 7 - 10 grams

By Boussaar
Posted July 3, 2009 at 12:22 pm
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Dennis,
I know this will sound really strange but I have no idea what any of my levels are now. When I go to my neph for review of blood work and urine analysis, he says everything is perfect, my kidneys are functioning as well as someone with healthy kidneys, I don't ask questions. I know when my kidneys shut down, the creatine levels were off the chart according to the neph and my protein levels were to. After a treatment of some chemo drug in the veins (same thing they give cancer patients) and a blood transfusion I left the hospital the day I was scheduled to do on dialysis. They had planned to install a temporary port in my neck and a permanent port in my right arm. I was advised of this on a Monday (7/2/07) and the dialysis was support to begin the next day. At 4:00 on 7/3, they drew blood and the neph came in at 10:00 and told me I could go home. My creatine had dropped substantially and the protein was also down.
My urine was tested on 7/6/09 in the neph's office and they said it was down to 1. In March of 2008, the neph declared I was in full remission with absolutely normal urine analysis and blood tests results. I am going for check ups every 6 months now. I went in April and he said the same thing, perfectly normal. He said I have done better than he could have expected but he also warns I am not cured, only in remission. He says FSGS is a very quirky disease and can blow up in my face any time. My kidneys were stripping the red blood cells out at a rate he had not seen before and he has been treating FSGS for over 30 years. He thinks Cellcpet is the key but he does not like to keep patients on it any longer than necessary due to the side effects (certain typesof cancer. I have never asked since 7/6/07 about any of my levels. I know they are going to be fine and I don't want to hear anything else. It is only in the last few months that I have tried to read or learn anything about FSGS. I knew it was bad and I didn't want anyone or any article to tell me I could not beat it. I am interested in the disease now and am involved in a study conducted by UNC Chapel Hill. My neph told me if they could just find the cause, the cure would probably follow. Unfortunately, there is really no concrete known cause. I am 60, white and female. According to my neph, I should not have contracted FSGS at 58. It affects more males than females, usually between 14 and 45 and more black than white males. Also, high incident in drug users and HIV positive patients. Go figure. When I go back in October, I will ask about creatine and protein levels. I hemoraged after my kidney biopsy and my hemoglobin crashed due to the kidneys stripping the red bloods cells out of the blood. I also gained 50 lbs of fluid and was on 80 mg of lasix when I left the hospital. I have not had any trouble with the Cellcept and only the usually side effects from pred, face swelling and stomach swelling, bad and thin hair but it was well worth the trouble. I have taken 2 lasis 20 mg since March 2008 and both times were my fault, too much salt. Also will ask about which variant I have. I know some are more difficult to treat than others. My kidneys shut down three months after the first symtom, swelling of left ankle appeared. Never had any kidney problems before in my life. I have leaned so much from reading all the postings and now I understand just how bad this disease is. I was on Cellcept for 9 months and I certainly recommend it.
Dennis, please continue your research. It is good to know we have people thinking and working to help themselves and others. I pray daily for God's blessings on us all.

By number-48
Posted July 3, 2009 at 7:47 pm
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Wow! i really appreciate the info! it is my husband with FSGS and any new info that i can get my hands onto that can be so beneficial is so appreciated! thank you again and good luck to you!

By DennisD
Posted July 4, 2009 at 3:36 pm
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More info for all:

I have some history of autoimmune disorders in my family. Father had sever MS also diagnosed unusually late (~58). A niece also has a light case. I've read enough to believe this related and drive up the risk of others in the family of getting an autoimmune disorder.
I had co-incidental osteoarthritic degeneration which ultimately forced a hip replacement but not before a doctor misdiagnosed the groin pain as some kind of UTI or prostatitus so he had me on several different courses of heavy antibiotics including CIPRO for 18 months before the FSGS hit. Simultaneaously, I was still playing full court basketball at the time and was taking massive amount of Ibuprofen ("Motrin") for the knee & hip pain. BIG mistake. Ibuprofen is now known to cause kidney damage in large doses as may CIPRO and others. Morale: try to avoid chemical fixes if you can BEFORE the damage. Of course, experts really do not know the direct cause of FSGS, but I'd bet there is a link there.

By DennisD
Posted July 4, 2009 at 3:44 pm
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Interesting responses that Cellcept seems to have worked without the prednisone for some. It did not for me in my early trial but may be worth another try, at least dropping from 10 mg to 5 mg (my body weight is 210) since the disease seems to morph somewhat with time and steroid treatment. Again, I seem to have stabilized at 2 x 500 MG Cellcept plus 10 mg prednisone (with metalazone, diovan & lasix) but would like to minimize the steroids.

By amelieMA
Posted November 18, 2009 at 12:58 pm
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Hi Dennis, My husband Steven is at the end of the road as far as meds are concerned: we will hear to-morrow if it is going to be cellcept or no more meds at all and waiting for transplant or dialysis. He was for one year on cyclosporine and we feel his kidneys got wrecked by that meds. His Gfr went from 64 to 18!
He is getting EPO shots once a week, just started two weeks ago. He is 73 and has always been very, very active. No other illnesses exept the high prednisone at the start of FSGS gave him diabetes which is gone now. He only takes 5mg every other day. BP is good.
Any advice, comment?
Thanks,
Amelie

By DennisD
Posted November 18, 2009 at 10:24 pm
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Hi Ameli - Unfortunately, CSA is "old school" for Nephs and tried in my opinion as the second suit to Prednisone far more often than it should be. It wastes valuable time and doesn't have the success rate of Cellcept + light Pred, but this disease is rare and Nephs go to old recipes in the absence of personal success, which most do not have.
For you, I'd go right away to 2 x 500 mg Cellcept + 5-10 mg Pred if it were me, and adjust from there, but I do not know the complications or history (it may be too late if your creatine is closing on 5) and I am no doctor. Remember than there simply is no single silver bullet for all cases. CSA could work for some, though Cellcept might as well. In some cases remission occurs. In some (not as many fortunately), it never does. But Cellcept is better than most. By the way, most days I have to remember I even have FSGS, my quality of life is almost equivalent to what it was 6 years back when I was disease-free. That does not mean I can't take a turn tomorrow. Good luck.

By amelieMA
Posted November 19, 2009 at 3:42 pm
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Thank you Dennis, for your speedy reply.
We just got back from the Kingston(canada) hospital and our neph. was rather pleased with the biopsy results as she explained: out of 16 glomeruli only 2 were damaged. This means less damage than she had expected. Also no evidence of damage to kidneys from the cyclosporine. We had a copy of your letters which she read. She had already decided to try cellcept and has prescribed 2x a day 1000mg cellcept, same prednisone 5 mg every other day. This with bloodtests every 2 weeks. Back to the neph. if all goes well and no bad side effects. We are hopeful!
Amelie

By BobbyDrake
Posted November 20, 2009 at 11:47 am
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I can agree with the Cellcept helping. I am currently about to turn 30 in a couple months and I was diagnosed with FSGS almost 6 years ago.

Prednisone - check 120 mg a day to start
worked well, side effects sucked, protien shot up as soon as I went off

Cyclosporine - check: Don't remember how much
Made me nauseaus and didnt' do much

Cytoxin - check
made me feel like crap and could have left me sterile

Cellcept - check
was on this for almost 18 months. I am off it now and my creatin lvls have been holding between .6 and 1.3

My protien is still way high, but my creatin lvls are pretty much normal. The only meds I take now are for BP and Cholesteral. I know that my kidneys have been damaged and will probobly never heal, but as long as they are filtering the bad stuff I will be happy with that.

I really think it was the cellcept that helped me.

By MacLean
Posted November 20, 2009 at 12:28 pm
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An interesting thread. I think whatever you and your neph "stumble" upon as a solution to your problem is what you go with.

Cellcept is one of the newer drugs for treating kidney diseases but for me, even with high doses, it did nothing. I am afraid the old "tried and true" cyclosporine was the answer. Yes, like all immunosuppressants it comes with side effects but we just don't have a choice.

I am white, female, diagnosed at 56 with no history of drug abuse, smoking, etc. Never had an illness. One kidney stone removal which did not go quite as planned.

According to stats had a 1 in 1 million chance of getting this disease. So why did I get it with those odds?

For me this is a disease where my immune system decided to attack my kidneys. To this day I think it is tied in with the kidney stone removal but I will never know for sure.

I think I am a better person for having to deal with this often emotionally hard disease. I will no longer look at anyone and make assumptions based on how a person looks .... about anything.

Take care.

By DennisD
Posted November 20, 2009 at 1:10 pm
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Hi Maclean -
Did you try the Cellcept WITH prednisone? It did not work on it's own for me either!
Good luck, and you have the right perspective. I do not in any way feel sorry for myself. I still have 2 arms and 2 legs! (well, actually, I just replaced both hips but that's another story) :)

By Boussaar
Posted November 20, 2009 at 4:03 pm
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Hi Dennis, I had every good intention of asking my neph about my numbers when I went for blood and urine analysis in October but I completely forgot when he told me he is retiring. I do not blame him for not wanting to mess with the socialized medicine but it sure is bad to lose good doctors. Of course, there is no guarantee I would have been assigned to him anyway. I am still in remission with perfect numbers. I do not take any lasix and only 5 mg of pred every other day and 2 BP meds. I feel good and cannot tell I have FSGS. I don't know how long this will last but I have been in full remission since March 2008. I firmly believe in the Cellcept and prednisone combination. I know everyone does not repond and I have been very blessed. In a recent Nephcure seminare I attended, the reseach doctors there said only about 30% of adults diagnosed with FSGS respond to treatment. Sure hope the socialized medicine will not be a death blow to us.

Welcome to Inspire!

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