Alternative Treatments for FSGS

Wondering if anyone has had success with alternative treatments for FSGS? Would appreciate any information you can provide.

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My 15 year old daughter started having symptoms of swelling on eyes and increased weight 2 and 1/2 years ago. First diagnosed with Minimal Change 1 1/2 years ago. They tried Prednisone for 6 months and not effective for remission. Then did no treatment for 4 months except diurectics and blood pressure pill enalapril. Then tried Prednisone and Cytoxan but no improvement. Then this August diagnosed with FSGS due to scarred biopsy. Then was on Prednisone and cyclosporine with some succes although not in remission after 2 1/2 months. She was able to be more active and had less swelling and no bother except Prednisone face. But then she had liver problems with cyclosporine with liver enzymes increased and itchy with bilirubin elevated. So.... the story continues. Now on Prednisone 75 mg every other day and Prograf (tacrolimus) and nothing but problems.... I hate the stuff. Emily has had all the general side effects of Prograf... shaky hands, diarrhea, poor appetite, headaches, difficulty sleeping, tingling.... plus it lets less blood flow to the kidneys so her edema has increased from normal 20 pounds up to 35 pounds. Also muscle weakness is common occurrence and she developed tendonitis trying to make Christmas crafts. Then to top it off, she was out with Dad taking pictures of a beatiful frost and got poked by barbed wire on leg and the leg split open... 19 stitches... I am planning on calling it quits with Prograf. Looked up Cellcept and I think that would be the next drug on my nephrologists list.

Sorry for the long story... complaints. Actually, my daughter and I have some great times and lots of laughs. We are trying to make lemonade with the lemons she's being dealt in life. I'm really learning a lot from others and speaking of lemons... I'm going to try that lemon water trick. You know how hard it is for a teenager to do a low salt diet.

God Bless You all and have a Merry Christmas even in the midst of your trials.

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Sorry that your daughter is having such a hard time. Have you considered retuximab? My son was diagnosed with FSGS in april and did not respond to any medication. Also he could not take cyclesporine or anything similar because of a very bad reaction that he had to it. Then in june he was given retuximab and went into remission after about seven weeks. His urine has been negative for five months now and he is doing very well. He is on one blood pressure med, but thats because his doctor says it's good for his kidneys (his blood pressure is fine), he also takes one med three times a week to prevent infection and that is all that he is on right now. He has no edema and we have not had any health problems over the five months. There is not much information on the use of rituximab for FSGS but from what I know other children have stayed in remission for about a year.
Good luck.

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Is your son steroid resistant? We may consider using Rituximab down the track, but for the moment our neph hasn't heard of much success with Rituximab in FSGS, so it is encouraging to hear stories like yours. Have you heard of any other kids with FSGS who have had success with Rituximab? (My daughter has FSGS and hasn't responded to pred, cyclosphosphamide, cyclosporin or mycophenolate; has had a partial response to Tune Mendoza)

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Hi. Yes, he is steroid resistant. He was 13 months old when he got sick and got very sick very fast. They tried him on steroids for four weeks with no response and his edema was out of control, he went from 23lbs to 35lbs. He was getting albumin three times a day but that was not helping to control the swelling. After the four weeks they started him on cyclosporin but he had a very bad reaction to it and was on it for only 10 days before they had to stop it. They also tried mycophenolate for a short time but it wasn't helping and his condition was so bad that the doctors started to say that the only way to save his life is to remove his kidneys (he developed a blood clote on the lung and was not eating). My doctor did not know much about rituximab either but we were out of options so we decided to try it. Luke is doing very well on it so we are happy that we tried it. I know that in England there is a doctor that is using rituximab to treat FSGS and I was able to get in touch with one mother who's daughter was in remission for 15 months after getting rituximab, now they want to give it to her again and I am waiting to hear from her more news. If you need more information or if you think that your neph would like to talk to my about the medication then I can give you his contact info (he is very good about talking to people about stuff and a very good doctor too), then you can email me at gabe_mika@cogeco.ca
Have a good day,
Mika

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Hi again, Sherry. Please let me know how you make out with the "lemon water trick". My son has been dealing with significant edema and if it works for your daughter maybe the skeptic in him will be more inclined to embrace the idea.

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Hi,
I am writing to see, like the question posted by Subie, has anyone tried COMPLEMENTARY THERAPIES, for FSGS -- meaning other than medications prescribed by physicians.
I am wondering about things like REIKI, ACUPUNCTURE, HOMEOPATHY, NATUROPATHY, AYURVEDIC treatments etc.

I am starting to consider this for my almost 4 yr old who has had the disease only for about 8 months now.

Thanks for any input,
Siobhan, mother of Emma

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My husband was diagnosed with FSGS in June of 2006 and has relapsed twice, each time they try to taper him down on prednisone. The last time was this past summer. He began to swell again and his protein went to 13. The prednisone did not seem to be working and he just kept getting bigger and more miserable. The fluid was in his knees and thighs and he could barely walk. Of course it was very hard for him to get his shoes on. He was doing the no salt, low fluids and low protein diet but it didn't seem to be helping much. We read on this site about a mother who gave her daughter lemon water to keep the swelling down. I went and bought lemons and he started drinking the lemon water that day. The very next day he started going to the bathroom about 3-4 times an hour. Within about a week, the edema was so much better! I still don't know if the prednisone had just decided to kick in and work but it just seemed like too much of a coincedence. There are times when he gets really sick of drinking it, but he can tell the days he doesn't....he just doesn't go to the bathroom nearly as much. I hope your son will at least give it a try....what can it hurt....and if it works it is great! He puts the juice of one small-to-medium sized lemon in a 32 ounce cup with lots of crushed ice, so it is probably about 16 ounces of water. It is pretty strong, so you may need to use a little more water if he really doesn't like it. Hope it works for him.

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.When my 17 year old had her birthday in Feb. I took her to the doctor for a check up, all was fine they gave her a meningitis shot and we were on are way. In May we were in the hospital and found out that she has FSGS. No cause no cure. They put her on cellcept, labetalol, lisinopril, procrit, iron, calcium and prednisone. This was a nightmere side effects etc. In Nov. they told us in spring she would be on dialysis and looking for a kidney. My husband and I were like my god what do we do? Thank god for computers. Found a web site getwellinternatioal.com I did talk to them on the phone also. We put her on Kidney Well 11 and Liver & antioxidant alot of pills. I did print out all the infro for her docter. He said it would be a waste of money but there was nothing in it that would hurt her. We were willing to try. By this time she was off the predisone. After the first month she stopped spilling protein. She has been in remission for 2 yrs. Did it help? I look on line for infromation all the time. The doctors are surprised and they can't explain it. They said FSGS is a progressive disease. Just like you we have so many questions. Did the shot cause kidney damage? did the herbal formula help? My daughter will be 21yrs.old this Feb. and she is having the time of her life. We took her off cellcept 4 months ago. all she takes is 5mg of lisinopril and in a few will off of that. She was only on the herbal for a few months ?????? I wish I had more answers but hope this helps.

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we have done acupuncture and pressure on our daughter who is also 4. We started with pressure with a traditional homeopathologist and then went on to puncture. We have seen some progress in regard to her sleep pattern and getting her into a calm state before any adverse procedures (getting blood). Our homeopath suggested we stay away form an herbs due to the fact that the kidneys filter everything. You should give it a shot.

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Is he continuing to drink the lemon juice as a regular part of his daily regimen -- one glass per day? Am anxious to hear how much he is taking. How long has he being drinking it now?

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Dear szaluski: Thanks so much for posting your reply and your information about the herbal supplement Kidney Well. My husband and I were very excited when we came across the Kidney Well site on the internet and printed out the information for our son's nephrologist. (Our son is 19 years old and was diagnosed at fourteen with FSGS and thus far has not responded to any of the standard treatments -- prednisone, cellcept, prograf, etc) Our neph, after reviewing the ingredients of the Kidney Well product, said that one of the ingredients, merinda, had is associated with hepatitis. We did not look into that association any further. However, based on the fact that our son's symptoms seem to be getting worse when on the immunosuppressants -- terrible diarrhea, acne, bloating, etc., we are feeling desperate to try something new and may still consider the Kidney Well. Your post regarding your daughter is very encouraging. It sounds like her condition initially had progressed very rapidly. Based on the fact that so soon after her FSGS diagnosis they were already talking about dialysis and a transplant, it sounds like an amazing response, possibly to the herbal treatment. Wondering if your daughter's nephrologist would be willing to talk to our son's regarding your daughter's remission? Please advise. Again, we are so very encouraged by your daughter's story and are anxious to hear back from you.

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How amazing is it that she has been in remission for 2 years!! Congratulations to you, your family, and especially your daughter.
The side effects of these medicines are so horrible - but what is our option???
That is why I am trying to find other measures to see if we can avoid putting Emma on Cytoxan.
I have been a nurse in Boston for 11 years, and the idea of giving my child chemo...I just don't know how to deal with this situation.
I am going to look up this website and do as you did, speak to her nephrologist about it and see what he says.
I have an appointment for myself with an acupuncturist this week and I am going to speak with her to see if she can do the pressure treatment with Emma.
I thank you both for emailing your experiences to me. I hope that my child can be helped by these things too.
Take Care,
Siobhan

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Dear Siobhan. We have also considered seeking treatment for our son with an acupuncturist. Exactly, what benefits do you anticipate for your daughter through this treatment? Would appreciate any feedback. Thanks. "Subie"

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He does continue to drink it every day. I think he started this sometime in October. He is on a 64 ounce fluid restriction so he usually fixes a thermos-type bottle of water in the morning with the lemon in it with lots of ice and sips on that all during the day. Sometimes he gets very tired of it because he makes it pretty strong with lots of lemon. I know some people add Splenda to it just to make it easier to drink. There are some days when he just can't drink it but if he even thinks he is starting to swell, he gets back on the strict regimen. I hope this helps. I really think it has been a life saver for Scott.

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HI Subie,
I guess through desperation you seek alteratives to the normal course, which the doctors can offer no real promises of anything.
I believe that the body is an amazing thing, and in many cases can heal itself, but in the right settings and given the right encouragement.
I am hoping that via acupuncture, that it will help relieve Emma's high blood pressure - which is also aiding and abetting this fsgs...that with improved blood flow, and hoping that it will give her body a sense of balance that it is possible for healing to occur.
I am also taking a Reiki class through my hospital, which is basically a "healing hands" sort of therapy.
I am also wondering about the kidney well II. It is just hard to know how much to give a 4 yr old...
Right now we are weaning Emma off of the prednisone, it has done all that it is going to do for her they say. Her urine protein creatinine ratio was 14 in April, and has come down to 0.65 on the prednisone...so they increased the dose again, and her number went to 0.80....strange...so they are now weaning her, and if the number goes up, then our option we are told is Cytoxan.
I am scared to death of putting this into her...so this is why as her mother i will try EVERY option out there to find hope, to find a way of getting wellness into her body, without poisoning it first...and don't get me wrong, we could still end up on Cytoxan...I just want to make sure we have tried other options as well.
Good luck,
Siobhan

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Dear Szaluski,
I am wondering what hospital your daughter goes to, and who her nephrologist is.
I am going to ask Emma's doctor, Dr. Ghaleb Daouk of Childrens Hospital of Boston, about the herbal remedy as well. I tried calling the site today, because I am not sure how much to give a 4 yr old...I am sure the dose is recommended for adults...they are closed for the holiday.
I just want to try something else before the discussion of chemo is brought up again.
It is so terrible that there is really no great treatment for this disease.
thanks again,
Siobhan

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Thanks for getting back to me, Siobhan. We are also considering taking our son to an accupuncturist. I agree with you that it is is very frightening being presented with the seemingly toxic treatments for FSGS. Our son is nineteen and has been on many drugs in the five years since his diagnosis. None to date has brought about a remission. Many of the side effects have been very difficult for him but we felt we had to try the recommended treatments to see if they would help him. He has been seen at many of the finest hospitals in the country -- from Children's in Philadelphia to Columbia Presbyterian in New York (among others) and they are all pretty much on the same page with the treatment options. Most recently he was on a combination of Prograf and Celcept but the resultant diarrhea caused us to require him to discontinue this regimen. We ran the Kidney Well by our neph and he researched all the ingredients. He objected to one of the herbs, Morinda, which in rare cases is linked to hepatitis. We may, however seek a second opinion about it's use. Please let me know if you receive any encouraging information re. alternative treatments. It's so helpful to have other parents to discuss our concerns with. Good luck to you as well.

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Hi, Siobhan, do you know the urine pH for your child. I read an article that a urine pH that is below neutral can damage the kidney and that it is necessary to increase the urine pH from 7 to 7.4. One way to do this is by drinking a 1/2 tsp of baking soda in 1/2 glass of water two times a day. Another one is to mix 1/2 tsp of baking soda with 2tbs of lemon juice or lime juice in 1/2 glass of water and drinking this twice a day.

I would like you to read the whole article but I will have to give you a website and I don't want to do this here because others might think that I am trying to sell something. If you are interested, you can email me at cks689@sbcglobal.net. This website has a lot of information on natural treatments and you will be able to read feedbacks from people who have used different kinds of natural remedies for various kinds of health problems.

I have FSGS myself and I was lucky to get a kidney before dialysis. I had a transplant in October and I am doing very well in my recovery. Of course, it was tough in the beginning but I am stronger now and I thank God for this blessing.

Cynthia

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My daughter is 15 and just to give you some comfort, she had no side effects from cytoxan except shaky hands. It didn't bring any remission. I understand how you feel about the medication. I am a nurse also. I try to trust the doctors and look forward to remission with the medication. But there are no promises and the side effects are discouraging. I am interested in lymphatic massage that someone mentioned... will look for someone who does this in the area. It is supposed to help with fluid loss. I am happy that my daughter fluid is stable at this time.

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Hi Cynthia,
I dip Emma's urine a few times a week at home, and her pH is always normal.
My daughter is AN EXTREMELY picky eater/drinker, and will only drink 1/2 water with 1/2 OJ, so getting her to drink something else, and even bitter would be impossible, but thanks for the reply....
I am glad you are doing well in your disease process, I hope we are there someday.
Good luck and Good Health in 2008,
Siobhan

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