Beating FSGS for 8 years

Hey there. I just wanted to say hello to the members of Adults with FSGS. I have been reading some of your discussions and so many things run through my mind when I read them.
I was diagnosed with FSGS in 2004. Initially my diagnosis was Nephrotic Syndrome, then I had a biopsy that showed I had the more aggressive form of FSGS (collapsing variant). To make a long story short, I started 120 mgs of Prednisone every other day. Because I was on Prednisone I had to take other drugs to help me with my stomach, my swelling, my blood pressure etc. This amounted to 13 pills a day. I was hyper all the time, had swollen ankles, moon face, thinning hair, (depression) and when I was weaning off of them I developed deep red scarring in my upper arms. I tried Cellcept next with less side effects, but no positive results as far as protein leakage. Next my option would be cyclosporin and after reading about long time side effects (I was developed a hatred for drugs due to Prednisone) I choose not to do cyclosporin.

At this point I decided to work out 6 days a week and improve my diet. I lost 35 lbs and it made all the difference in the world for me. I have been in what my doctor called a stable state, with a creatinine of 2.0 for 8 years now. Today my daily regimen of medication includes lisinopril with HCTZ, Vitamin D ( I have high parathyroid levels associated with FSGS) iron supplements, and Lipitor 20.

What I wanted to state is this. FSGS is different in everyone. My experience is not someone else's and vice versa. But doctors tend to treat all of us (FSGS patients) the same. We are given drugs with the hopes that they help and when one doesnt work, we get given another one until something works. I'm a firm believer that you are your best doctor as long as your honest with your symptoms and/or feelings. My nephologist calls me his "most defiant patient" yet for someone with the collapsing variant of FSGS, I have also been his most successful. Reading and education yourself about the disease and the medications allows you to take charge and make decisions about your healthcare that you feel comfortable being a part of.

If I can help anyone who suffers with FSGS like myself or you just want to chat, then great. Its nice to meet you all.

Renita

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Hey Renita,

I am my nephrologist's most defiant patient as well :-). After he told me all the side affects associated with prednisone I told him I didn't want to take it. He was floored, no one had ever not done what he told them they had to do before. I did go on the water pills that he prescribed and a year later I also went on the blood pressure pills but to date I have not gone on any steroids. With diet I have been able to get to trace protein. Right now I have not been strict with my diet for over a month and I am spilling more protein than trace but I know that with diet I can control it.

It would be good if all nephrologists would teach themselves about diet and nutrition so that they can pass that knowledge onto their patients.

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I firmly believe it is our diet that keeps us going. Your story sounded just like how mine began. Diagnosed with NS, biopsy = FSGS. They put me on Pred, BP meds, Lasix and Cholesterol meds. The Pred did nothing but cause side effects,
i am steroid resistent. I was only to be on it 6 months ended up on it for a year before anyone noticed it was supposed to be stopped. Then they tapered down and put me on Cellcept too. neither worked. I was on Cellcept for over 2 years. Nothing touched the protein spill. Yet my kidenys kept going even at a low GFR. I lasted 7 years. This Friday I go for Vein Mapping for an AV Fistula. NOT looking forward to that. Only that it will keep me alive.
I drink green tea every day and also believe that has helped me tons.
Good luck to you and that you keep going on and on!

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Hi, could you elaborate on the diet bit please? There is a lot on inspire about dairy free/gluten free and egg free but I am finding that an uphill struggle with a 3 year old, especially the gluten free part. What kind of diet modifications did you make?

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Mamagemini - good luck with your dialysis journey. I was on pd for 1 year and did dialysis at home at night while I slept. I got a transplant on 11/1/11, but the year I was on dialysis went really well. Did and your doctors consider pd? My transplanted kidney has been diagnosed with fsgs, which I had never heard of before. My original disease was alports syndrome.

Renita - I'd love to chat with you more. I also have the collapsing variant in my newly transplanted kidney. The nephs are calling it recurrent fsgs in a transplant because of the way it came on so strong, even though I had been diagnosed with alports as my original disease. Recurrent fsgs in a transplanted kidney is bad news, as it means it will be more difficult to get another transplant down the road (some centers refuse to do it, including mine). UNLESS my kidney lasts for several years, then that would change the picture. So I'm very interested in your story, given we have the same variant of fsgs. I have gone gluten "free" and am taking cyclosporine & cellcept as immunos for my transplant. Plus 10 mg prednisone daily for my transplant. Also I get plasmapherisis 3 x week which I think has helped. But so far in the past 2 months since my diagnosis nothing has affected the protein spill of 11+ grams. I remain hopeful it will improve. I'm curious what kind of protein spill you've had over the course of your diagnosis, and what it is now. I recently started on cozaar and am hoping that will help some. Thanks for your post! It's an inspiration to many.

Jane

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Hi Renita,

You are in the right track to deal with kidney disease.

I am a researcher in Washington University. In addition to my scientific research, I also participate the education of public health for Chinese community in St. Louis.

Based on the studies by a practitioner of Chinese medicine (published in Chinese on the case studies), he observed a vegen-based diet (potato or brown rice-based) and walking at least 2 hours per day (if the patients are not well, he recommends walking inside your house/appartment) is the key to regain patient's health besides the herb medication. In addition, no matter what kind of chronic kidney disease (e.g. MCD, FSGS, or IgA) that patients had, he applied the same strategy to his patients and nearly all patients were in complete remission within 6 months. Even the patients are in dialysis, this strategy has shown to dramatically reduce the frequency.

This opinion may be oppsite to your doctor's comments. However, I firmly believe that patients should have the rights to know any possible ways of the treatment. The patient, not the doctor, is responsible to his/her own choice and destiney.

Mike

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Hi Jane. Im sorry to hear about fsgs getting into your new kidney. Its ironic that just today I was talking to a friend of mine, who is going on her 6th year with fsgs. She also has the collapsing variant. This is why I say that fsgs is different for everyone. I was steroid resistant and so was she (but most people with collapsing variant fsgs are steroid resistant. I tried Cellcept and that didnt work either. My friend tried Cyclosporine and that worked for her while I wouldnt try it because I was over drugs in general.

Today we both are NOT on prednisone ( I have enormous hatred for that drug), cyclosporin or Cellcept. We take medications with ACE inhibitors to keep our blood pressure in control. Its so weird that fsgs appeared in this new kidney when you previously did not have fsgs. Do you think its possible that you were misdiagnosed with Alports syndrome instead of fsgs? Because when someone has fsgs, there is a 20-50% chance that fsgs will return in the new kidney. It can happen in hours to within a year. When this happens they perform the procedure you are currently doing (Plasmapherisis) because they think there is something in the blood that causes the reoccurance and the procedure tries to "clean" the blood.

I have read a lot lately about gluten free diets and persons with kidney diseases eliminating gluten. I am not on a gluten free diet. I eat chicken and fish predominately, lots of veggies but I also eat wheat and have for the last 8 years. I know that it has definitely helped others, but in my case I dont know what eliminating it would mean for me. (mayve I should try) I work out 5x a week,. try to limit fatty foods and sugars. That concept helped me to lose 35 lbs when I was getting off of steroids. But, if eating gluten free is working for you and you feel well enough doing so then continue with what is making you feel well. As I mentioned, I try my best to advocate for awareness and involvement. When I was initially diagnosed, I had no idea what fsgs was all about. My doctor said lets try Prednisone. I tried Prednisone. Now that I think about it, I was the one who went to him and said I wasnt going to do it anymore. I told him I was weaning myself off of it because I hated the side effects. I was on it for 3 months and weaning takes another 3 months to completely get off. From that day I vowed to be in control with GUIDANCE by my nephrologist, but I ultimately would be making the decisions.

Give it time. I know the protein leakage numbers can be alarming. When you have the collapsing variant of fsgs, you think in two years you will be on dialysis because that is all they know (its all my doctor told me). Im on my 8th year and I feel lucky, plain and simple. My friend feels lucky. And we do only what we feel is best for us, again, with our doctors help.

You said you "remain hopeful it will improve". Keep believing that and do your very best to help make it possible. I do have strict things I have adhered to since coming off of steroids. I work out atleast 3x a week. I watch my sodium intake with a fine tooth comb. I try to remember to drink lots of water. Vitamin D is my favorite. I do not eat shellfish of any sort because when I was diagnosed with fsgs I became allergic. I only consume alcohol once a week (and its usually special occasions). I eat limited red meat but enjoy a steak once in a while (as I have become anemic a couple of times). Fatty food are delicious but not worth it. I try to sleep atleast 7 hours a day and I find time to enjoy every opportunity of fun that comes my way. :-)

PS...when I was first diagnosed my protein spillage was out of control. Today I leak half the protein I did in 2004, but it took me about 6 months before I saw this happen.

I hope to say in touch and if you need any help going forward, Im here :-)

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Hi Renita,
the transplant nephs are not sure if I my fsgs is recurrent or de novo. They're treating me as if it was recurrent but my nephrologist before the transplant says I was not nephrotic before the surgery, and she has my records back to 1999. Also my albumin was always really good before, so she seems to lean toward me having alports before the transplant. They've told me we'll never know for sure. I've been tested for the circulating factor you mentioned called "supar" and don't have the results yet. Apparently last summer a big discovery was made for fsgs: http://www.nephcure.org/Cause-For-FSGS

The doctors at my transplant center talked to me about this discovery yesterday and said they have an antibody to treat it. They had me sign a consent and took a sample of my plasma removed during plasmapherisis. I guess they'll be performing research with my samples. They haven't mentioned me receiving the antibody yet. I suppose the antibody is a kind of supar inhibitor. The dr. is very well known in the fsgs world and he was pretty excited about it.

I'm glad you're not on prednisone and the other immunosuppression meds. Of course I have no choice about that being a kidney recipient. Your post is very encouraging to me - thanks! I guess from your post that your protein levels were as high as mine now (11 g spillage) and you've done fine by reducing it in half. That's a good goal for me. My cozaar was increased from 25 mg to 50 this week, and I was on 100 mg for many years before my transplant so I still can have it increased more. Hopefully all these things combined will improve my fsgs - exercise, diet, salt reduction (elimination when possible), encouragement from others, positive attitude, cozaar, plasmapherisis, immunos and maybe the new antibody discovery down the road!

Jane

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That is awesome that you have done so well for so long with collapsing variant. My son had collapsing variant--he stayed on a strict diet, took all the different meds (was steroid resistant) and did everything right and his kidneys still failed 11 months after he was diagnosed. You are right--it is different for everyone. Keep up the good work!

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Thank you Magdelena. I honestly feel lucky every day. My friend who also has collapsing variant FSGS is in her 6th year and doing well also. But I know that we are not the norm when it comes to most with FSGS so I feel lucky to be where I am. I dont take anything for granted though. If I have the opportunity to travel, or compete in something competitive, or do something at the spur of the moment, I do it because I think one day I may wake up and be really sick. I spent a lot of time researching FSGS when I was diagnosed. I stayed in the loop and continue to do the same.
About 3 years ago I was asked to be part of a clinical trial for FSGS and I declined because I did not want to be put on new medications which could potentially worsen my situation or bring on bad side effects. I figure if I have managed this long with cholesterol meds, ACE inhibitors, a mild diaretic, vitamin D and iron supplements for this long, I do not want to incorporate anything new. FSGS is different for everyone. I know some people do no gluten and some eat a balanced diet. I honestly think it all depends on the individual. Yes, there are general guidelines, but besides those how I do with my FSGS is clearly different than how others do, but I take nothing for granted. I've read some threads in the FSGS board about exercising. Some say stenuous exercise is not good for us. Some articles say it its important to exercise to keep our bones strong and to keep us healthy. I have been doing full contact kickboxing for 3 years, I consider it strenuous but I also love it more than any sport I have ever gotten into. I consider exercise valuable and believe it has contributed to some of my positive progress with FSGS. But some articles say,just walk, or jog. And all I say is this...It is up to the patient (and/or parent) to pay attention to themselves and listen to our bodies. If we feel well enough, then do the things we enjoy and that make us happy. If our doctor has us on a certain type of medication and you dont like the way it makes you feel or no good results seem to be coming from a medication, then talk to your doctor about it. I believe its important to manage our care along with a doctors guidance, but I do not do well with take this and take that and if it doesnt work then we will try this and then that. (Me=Defiance :-)

Mag...did your son get a transplant?

I wish you all well.

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Yes my son had his transplant in November 2009 and his FSGS is absolutely cured!!! We are so incredibly blessed. He is in college now. He is starting working for the Nephcure Foundation and he wants to be a motivational speaker to help families through kidney and other diseases. Life is good good good!! It hasn't been completely simple--he had to have his tonsils removed a few months ago because he kept getting chronic throat infections, and he has to take his meds every 12 hours for the rest of his life...but it sure beats dialysis!

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Hi Renita,
My story is similar to yours but some of the meds have helped a lot. I also was diagnosed 8 years ago, 9 in april. My diet was good, really good prior to the disease showing up. I was basically a vegetarian, low or rare gluten, lots of vitamins, lots of exercise. After my first stint with prednisone, I hated it so much, that I refused it for several years after. During this time of holistic medicine my disease progressed from MCD to full blown biopsy proven fsgs. I was also doing regular acupuncture. My creatinine went over two.
I tried cellcept twice to no avail once things got that bad. Now that I have found a middle ground with some meds, including the formerly not working cellcept at a much higher dose, I am in remission and my creatinine is normal at 1.0. My albumin is normal at 3.7. I have been on the low protein diet, the low triglyceride diet, the gluten free diet and have been extensively allergy tested. The diets did noting for ME. (Yes, eating tons of protein increases the protein spill, but thats just math) I am only speaking about me. With the cellcept now and the occasional steriod infusion I am holding a remission for a first time. I am so happy that many people can do it with diet. I am so happy that some people can find holistic ways that improve their life. But it is important to note that there is not a cure yet and that not all things work for all of us. Now that SuPar, a circulating factor has been discovered, I hope that when the drug that supresses its production will be developed,I hope to be first on line for that drug. Prescribed meds can be tough and like others there are ones I hate that felt worse than any disease. But I truely believe we must continually self-educate and be open to everything including western medicine. If I had a 2.0 creatinine I would be desperate to do anything I could if there was a way to slow the progression. Thanks for sharing your experiences and being supportive on the board.

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Hey Esther

I loved your story and your so right about everything you said...atleast its my philosophy. You will be surprised to know that my creatinine has been on average 2.3 for years. My labs 8 months ago was a 2.6 creatinine and a month ago it is now 2.0. To my doctor, this is still considered stable in my situation because my protein spillage is minimal. I had to think about what I did in the last 6-8 months that helped my creatinine so much better. At first I couldnt think of anything. I was eating pretty much the same way. But in that time I was part of a weight loss challenge in my gym. I ended up winning but I dedicated myself to the gym 4-5x a week. I did not lose a lot of weight (15lbs) but I lost inches everywhere. My doctor thinks this is a huge factor. I would like to think so but I also think, who knows? Im just doing whats best for ME! Because FSGS is a ME disease. The levels of support should be the same, loving and caring forsure. But the care and outcome is seemingly different for everyone. I've had some issues that I havent heard many talk about on the boards like anemia and elevated levels in my parathyroid glands. I fixed the iron with iron infusions and I take Vitamin D to regulate the parathyroid levels. It all works for me but again, its not necessarily everyone so its important to me that Im compassionate about everyone's scenario.

I hope you continue on the good path you are on and continue to share your story.

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Yes, I agree that when you graph your creatinine, you are on a good trend, a really good trend.
I also agree with you that anemia which is so common for us fsgs patients is not discussed. I have had the iron infusions but they don't seem to do much as I am told the anemia is not necessarily from iron deficiency but rather a secondary side effect of the fsgs. The vitamin d is also what drives the parathyroid elevated numbers but only when I went to the NIH was this assessed as both my nephrologists did not really get the nature of the vit d problem. I now know that a low normal is a flag for kidney patients. Good luck with your improving numbers. I get it about the weight loss which is also hard to asssess because how much is actually edema from the albumin? Only when my albumin got to normal again did I see that was I really too thin! I had been carrying over 20 lbs of fluid that is now gone!
Good luck to you too on this wild ride,
Esther

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