Some cases of nephrotic syndrome in focal and segmental glomerulosclerosis (FSGS) are associated with a circulating factor, the FSGS permeability factor (FSPF). Galactose has a high affinity for FSPF, and experimental data suggest that it could reduce its activity. We describe the case of a 48-year-old male with a nephrotic syndrome found to be resistant to corticosteroids, immunosuppression and plasmaphaeresis. The patient was given oral galactose as a last resort treatment, which was followed by a remission of his nephrotic syndrome that correlated with a reduction of FSPF activity. This case is the first report of a long-standing remission of an FSPF-associated nephrotic syndrome on oral galactose therapy.
Keywords: focal segmental; galactose; glomerulosclerosis; nephrotic syndrome; permeability factor
http://ndt.oxfordjournals.org/cgi/content/short/24/9/2938?rss=1
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FSGS remission after oral galactose therapy...
- By maaxiim
- Posted August 17, 2009 at 1:24 pm · 32 replies
- In Adults with FSGS
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Cancer CellCept Nephrotic syndrome Plasmapheresis Proteinuria Ovarian cancer Dialysis Cytoxan
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- By Dux
- Posted August 18, 2009 at 12:49 pm
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the truly sad part about this is that galactose, which is basically a sugar, with no absolutely no side effects is used as the "last resort" for an individual; or any individual with fsgs. why? it should be the first resort. i question the doctors, and the drug companies motives on this to use medications that are extremely dangerous double edge swords, instead of a medication that has been proven to be safe. galactose is also used for those with ovarian cancer. it has been around for a long while, and it appears to work.
earlier this year, a case study and trial was also done and posted here at nephspace. here is the link:
http://www.inspire.com/groups/nephspace/discussion/galactose-trial/
they had great results. the comment that was made was that it was going back to trial, and more research needed to be done. why again? i am at a total loss on this. as a sugar, it is basically a food, and like vitamins, the drug companies, and/or the food and drug administration should not have any control over it. you can actually buy it right off the net in bulk.
for my part i do not know what is scarier. nephrotic syndrome, and it many variants, or the medications that are used to treat it. here is one that is safe, and proven to have results. let's get this medication out to the people now, use it as the first resort, and then fall back on other medications if there is no response to the galactose. we have nothing to lose in doing this.
- By Beth75
- Posted August 18, 2009 at 1:07 pm
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thanks I am going to bring this to my Neph, I see him on 8/26.
- By shenangwyn
- Posted August 26, 2009 at 10:44 am
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This sounds great but it is in the 'Exceptional cases' section and only refers to a single case. I have tried to look into it and it seems the clinical trial has been suspended with no reason given : (
- By bobr
- Posted August 28, 2009 at 4:39 am
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I have NS and heard about galactose last week. I was diagnosed a year and a half ago. Been on and off prednesone a couple of times but keeps coming back. Now just taking CellCept but didn't show much improvrment, Galactose found to be expensive. I researched and found that celery has a lot of galactose but hard to eat the quantity I needed 2 cups twice a day. Got a juicer and mix 2 parts celery with 1 part carrot juice and add a little V8 for flavor. After 6 days my protien is down to almost nothing! The formula is .2grams per 1000 grams of body weight twice a day.
- By bobr
- Posted August 28, 2009 at 5:32 am
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Sorry I wasn't clear on formula> 1 kilogram = 2.2 lbs. I weigh 200 lbs /2.2 = 90 KG X .2 = 18 grams twice a day. 1 cup of raw celery = 8 grams of galactose. 2 cups of celery makes about a 3rd of a cup of juice so after adding carrot juice and V8, I drink a half of a glass twice a day morning and evening.
- By amelieMA
- Posted August 29, 2009 at 10:11 am
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Can "galactose" not be found in drugstores/pharmacies without trying to get it from celery? I understand it is also present in beets, see below,
Amelie
Galactose is in the same family as sucrose, fructose and lactose.
Galactose is found in milk and whey, as well as the human body.
Nursing infants obtain the galactose required for their development and maturation from mother's milk.
Galactose contributes directly (as well as through bonds by way of contact points on cells) to vital information and control processes in the body. It also functions as a fundamental and structural substance for cells, cell walls, and intracellular matrix.
Galactose is obtained from a protein-free distillate of whey and lactose.
High doses of galactose have a laxative effect; it is otherwise absolutely harmless.
Galactose is produced in two- to ten-gram quantities (per day) by all healthy people. This D(+) galactose has a simple sugar structure and is a basic building block of life.
- By bobr
- Posted August 30, 2009 at 5:15 am
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Most any doctor and nutritionist will tell you that the best way to get any nutrient is fresh from the source, from the vegetable or natural item which contains it.
- By smile213
- Posted August 30, 2009 at 11:48 am
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Thanks so much for this interesting discussion. This is something I am ready to try for my steroid resistant FSGS. I do have one question. Did the high sodium/potassium in celery cause any problems for you? I will definitely talk to my neph about trying this--especially since we've run out of other options...
- By debmiller
- Posted August 30, 2009 at 12:49 pm
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Where and how did you get oral galactose?
- By EllaM
- Posted August 30, 2009 at 5:47 pm
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I don't know how accurate this is but here is a link to a list of foods and their galactose content. From what I can see, dried figs have the highest galactose content and then milk. Celery seems to come very low.
http://www.galactosemia.org/galactose.asp
However I've seen other sites which give different levels of galactose for the same foods, it's just this one seems the best researched and is designed specifically for parents who want to AVOID galactose for their children.
We looked into getting oral galactose and came up with these suppliers:
http://www.galactose.org/source.html
http://www.mpbio.com/ and search for galactose.
- By bobr
- Posted September 1, 2009 at 4:49 am
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I too have found different levels listed for galactose content, I guess it depends on the lab that did the testing. Also the level might vary depending on the how much sun etc. the plants get. Galactose suppliers look to be expensive. would cost me $130 for 6 day supply! And I don't think insurance would cover it because it's not prescription drug.
- By debmiller
- Posted October 26, 2009 at 11:14 pm
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Has anyone found out why the trail study using Galactose was stopped? I want my husband to take it, we think we can get it rather easily...but wondering about the study. Or other information from anyone who has taken it with success...or even with out. Are there side effects.. etc...
- By hope4health
- Posted October 27, 2009 at 8:02 am
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This is my understanding of the study. It was only a basic research trial with a limited number of subjects (23). If it proved promising, the researchers were going to submit a proposal for a large scale study. Last week I was told by one of the doctors conducting the study that 19 out of 23 subjects had a reduction in their serum permeability factor. The other 4 had not had their follow up serum analyzed yet. I am one of those 4. (It has been sitting in a lab somewhere-since April!) The doctor I spoke to really seems to want to move this along, but seems hamstrung by research protocols beyond his control.
Here is what they are very cautious about communicating: whether or not the reduction in the serum permeability factor means a reduction in or elimination of proteinuria. That is the underlying hope, but they do not know (it's never been studied) and did not measure this. They didn't have the subjects submit a 24 hour urine test so no one knows. That would be studied in a full scale clinical study.
In terms of taking galactose, its the easiest thing I've done--no side effects at all, pleasant taste, easy to use. In terms of my particular kidney situation it seems it was too little, too late. I had already started going into renal failure right as I begun the treatment. But we will see what it did to my permeability factor and I will keep you posted. Galactose can also have significant relevance for transplant patients preventing recurrence.
- By debmiller
- Posted October 27, 2009 at 8:51 am
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My husband has had one transplant and is on his second (got 2nd one in May 2009). First one he had reoccurance right away and new kidney did not last. This time he shows signs of reoccurance, but biops. had not concluded that FSGS is back. However, he does still lose protein so that is why we are interested in the Galactose. Kidney function is good right now, but we understand that the leaking of protein will damage the new kidney so we REALLY need something to stop protein loss. Something that seems so simple should be out there with more information.
- By hope4health
- Posted October 27, 2009 at 10:24 am
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Yikes. You really do not have any time. Here is what I would do: I would have my nephrologist call one of the doctors heading up the study.
- By debmiller
- Posted November 2, 2009 at 9:14 am
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Anyone have any news on Galactose study??? Why it was cancelled, if it works...anyone have anything on it?
- By santosdjja
- Posted November 2, 2009 at 4:31 pm
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I was part of the galactose study run through LIJ Schnieders Hospital in New York by Dr. Trachtman, that was in February. It was only a month long study and I took galactose powder mixed with water twice a day. My protein level dropped to less than 1gram and has not gone back up since! I am going on 8 years post-transplant with my FSGS reoccuring within 6 months of my transplant in 2001. I had tried EVERYTHING prior to this and I am still shocked how well the galactose worked with no side effects. I had not heard that they suspended the study and I'm not sure why they would have done that. If I were you guys I would do anything you could to load up on this stuff, however you can get it, dried fruit, celery whatever works. Good Luck.
-Jenn
- By jlinsanjose
- Posted November 3, 2009 at 4:13 am
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Santosdjja, did you take the galactose for only one month? Was the galactose provided by the clinical trial? I'm still trying to find out how and where people can purchase galactose. So you noticed positive results within one month? Another study took six months to be effective. Also, you no longer take galactose and you're still less than 1gram protein in urine or blood?
- By santosdjja
- Posted November 3, 2009 at 7:56 pm
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I only took it for one month, back in February, 2x a day. The galactose was provided by the clinical trial. I haven't taken it since and my urine protein has been less than 1gram.
- By jlinsanjose
- Posted November 4, 2009 at 3:53 am
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What was your creatinine level prior to the oral galactose? Are you still taking immunosuppressant drugs or anything else to maintain the remission?
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