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Galactose trial

stretch
2 Recommendations

Hi all.

I was wondering has anyone tried the Galactose trial for fsgs ans what was the outcome?

Explore topics in this discussion:

Cancer Cytoxan Prednisolone Prednisone Plasmapheresis Diabetes Proteinuria Ovarian cancer

52 replies

Dux

I did some quick research and this seems to be an interesting drug. Glactose is a type of sugar or "nutritive sweetener," and this is it's link via Wikipedia:

http://en.wikipedia.org/wiki/Galactose

It seems that it is also used as treatment for ovarian cancer, and trials for FSGS. I am trying to do some research to see if there are any side effects to this medication. I will let you know what I find out.

Dux

Here is some more information, and how to get in on this trial:

http://clinicaltrials.gov/ct2/show/NCT00816478

But as you said, this is a "trial." So I am not sure anyone can let you know about it's outcome.

Dux

I am not so sure I found anything really negative about Galactose. How refreshing! It seems to be very important in regulating the immune system. Here is a link to a site that speaks of Galactose:

http://www.content4reprint.com/health/wellness/what-is-the-glyconutrient-ga lactose-and-how-does-it-benefit-the-body.htm

It says in this article that as a "supplement will do no harm." I am not sure however, if this form of Galactose will be used in the trial, and in the past, we refused to go on any of the trails because this drugs seemed to be so dangerous. On both sides of the trail.

Again this trail seems to be a bit refreshing....providing of course that the drug on the other side of this trial is not a pred. pulse, or something else not so nice. What would be the point? Clearly those with FSGS are not responding to these meds anyway. Hopefully they will be using a placebo as the other option. I think I would almost demand this.

Could we not all just go down and get a Galactose Supplement from our local health food store? I do not know. What would be the dose? Something to think about however.

Best of luck to you.

mmm

My 11 year old daughter with treatment resistant FSGS was approved for this study and will start this week. I will let you know how she does.
This is the third clinical trial she has been enrolled in. We are praying for sucess.

brian_josephs_mommy

Hi Stretch,
There is a Nephrologist at Chop that is doing clinical trials with Galactose....It is basically sugar...just a less sweeter one..It's also known as brain sugar. Brian (my son) was selected to do the research so I have some information on it. Although, we did not try the drug...Brian's Nephrologist wanted to start the Cytoxin and then got some distraction with that and he is on a whole other treatment!!..
I do know that they have only tried this with adults so far....They don't know what the outcome will be in the future with the side effects but as far as they know there are absolutely no side effects in the immediate future...
This kind of sugar is found in soy milk, I know that so if it is put in food I doubt any side effects will arrive in the future either...
Since it is pure sugar, I would imagine that, that would give her loose stools and a lot of them a day...
They have some real good outcomes with it in adults...I was going to try it but the Nephrologist thought that maybe since my son never responded to Prednisolone or Intravenus steriods that maybe we should try the drugs that have been proven to work first.
I say give it ago it cannot hurt anything...Imagine using only sugar to put this in remission. I was willing to give Cytoxin (a chemotheraputic drug) to my son...What's some sugar??....lol...
I hope everything works out for you, you'll have to let us know how that works out, if you decide to give it a go!!..
best wishes and take care,
toNi

brian_josephs_mommy

forgot to mention...the only reason why it is in a clinical trial is not because of the future side effects but because they are still unsure of it being a treatment for fsgs.....there isn't enough research on it to say that it will work for sure.....they have to get participants to try it, so they can prove that it will work..
Again best wishes and take care,
toNi

mwl_NCF

Hello Everyone,

This is a great discussion. We recenty posted an article on Galactose on our website at http://www.nephcure.org/News-Galactose.htm.

I also encourage you to contact Pegah Safaeian at NephCure. She will be able to provide you with more details about this ongoing trial and answer any questions you may have. Pegah can be reached via email at psafaeian@nephcure.org or call (610) 540 0186 ext. 25.

Have a great day.

Miriam
mlong@nephcure.org
The NephCure Foundation
www.NephCure.org

stretch

Thanks everyone who replyed. best post yet lol.

I was asked by Dr Trachtman to find out how much it will cost to ship a blood sample to usa the next day, so will have to get on to that 1

mmm

Fed Ex charges $37.00 from Detroit to Long Island overnight. The charge is $50.00 from the West Indies (St. Kitts/Nevis) to Detroit overnight.

kjjohns91

As I mentioned in the Kidney Well II posting, we've tried a product (Ambrotose) from a company called Mannatech. There are a bunch of glyconutritional products on there. The first time we tried it was about 4 years ago. It doesn't seem to be a cure all, but our daughter was diagnosed with progressive FSGS at age 4 and now she's almost 10 with really not much of a change in her kidney function. If we can use these products to hold off on transplant for as long as possible, so be it.

santosdjja

I am a part of the trial that is being run by Dr. Trachtman at LIJ, I started about a week ago and I have had no side effects whatsoever. It is actually pretty tasty! The trial lasts for one month so I'll let you know how it goes.

-Jenn

Dux

Jenn,

This is really good news! We finally have someone in a trial. I keep complaining that no one is trying to come up with a medication that will "do no harm"....but now I think we have one. I can only pray that this works, and that it works for you.

Are there two sides to this trial with one being a placebo?

Best of luck to you.

santosdjja

There is no placebo in this trial, everyone gets the real thing. After trying EVERYTHING else I too pray that this works.

Ljillson

Hello stretch. My 14 year old son started Dr. Trachtman's Galactose trial 2 weeks ago. I do see a slight improvement so far. Keep in mind it has only been 2 weeks. He has not experienced any side effects. The only side effect I am aware of is diarrhia.
My son does not like sweets so he is not thrilled by the taste. That is a small price to pay if it works.

Since there are no horrible side effects we figure it can't hurt to try it. It is nice to have something new to try since he has failed all other treatments.

Good luck with your decision. Ljillson (Lori)

Ljillson

Hello stretch. My 14 year old son started Dr. Trachtman's Galactose trial 2 weeks ago. I do see a slight improvement so far. Keep in mind it has only been 2 weeks. He has not experienced any side effects. The only side effect I am aware of is diarrhia.
My son does not like sweets so he is not thrilled by the taste. That is a small price to pay if it works.

Since there are no horrible side effects we figure it can't hurt to try it. It is nice to have something new to try since he has failed all other treatments.

Good luck with your decision. Ljillson (Lori)

Dux

Please Ljillson and Santosdjja, keep us informed. We would all hope for a safe medication that would treat this horrible disease. It is my biggest wish that our Western doctors finally think outside of the box, and come up with a cure that does no harm.

All our hopes are with you.

stretch

Hey all It's a bit hard getting onto these trials when people live outside the usa, Giorgia's only been on the gene trial to date.

Hope all is good

santosdjja

I wanted to let everyone know that after completing the galactose trial with Dr. Trachtman it seems that my permeability factor dropped into the normal range and, from what I understand about this complex science, that permeability factor should have a direct effect on the protein leakage. The jury is still out on my protein, I am having lab work in a few days so I'll let you know how that goes. But overall the docs feel that the trial was a great success and are looking to extend the study even further. This was the easiest thing I have ever done and after cytoxan, rituxan and
pretty much every other thing out there, this was a breeze!
Keep up the hope!!

kjjohns91

That sounds like good news so far! Anyone else finished with the trial? If so let us know how it went. When participating in the trial, what form were you given the galactose in? There just isn't that much info out there yet. When looking for a galactose supplement, I just can't find anything. Hopefully they speed these trials up and stay on top of things so we can get some information out.

Good Luck!
kjjohns91

santosdjja

The galactose was in a powder form that looked and tasted just like confectioners sugar. I had to mix it with a small amount of water twice a day. It didn't taste bad at all and had no side effects for me.

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