INS1 may not be gone for good!

Kittycat · 12-18-2002, 04:19 PM

I don't know if anyone remembers but Insmed Pharmaceuticals was developing a new drug for women with PCOS called INS1 and I participated in the clinical trial for it. I was on it for 9 months. For the first three months I felt nothing but then AF started showing up. For the next 6 months of the study AF came every 30 days. As soon as I stoppd taking the drug AF stopped coming. This was a huge breakthrough for me because before the study AF came once a year, if I was lucky. Often I would go over a year withhout any sign of AF and once I went three years without even one single appearance from AF. Now Im taking glucophage (2000 mg) and haven't seen an un-induced visit from AF yet. (It's been 6 months).

Before going on th study drug I was hypoglycemic and fainted during my baseline GTT. After being on it I didn't have any more trouble during the next couple GTT's. The drug had no side effects at all.

The bad news came when Insmed announced that they were "dropping" INS1. They said that the clinical findings were not as promising as they had hoped. However, many many women with PCOS got pregnant during the study that weren't able to before. I've been ttc for 5 years with every kind of fertility medication known. Nothing has worked for me. I have NO doubts that if I had stayed on the INS1 I would have gotten pregnant.

I called Insmed and they are working on merging the manufacturing of the drug with a nutritional company. The VP of Business Development called me back and is looking up my results while being on the study. He said I could be of tremendous help to them in getting a nutritional company to make this as a supplement for people with Type II and PCOS. I am so excited! I would do anything to get this drug again! I am hoping and prayingt that it works out. I think it would really help us.( BTW, It's not really accurate to call it a drug since its a natural substance found in fruits and veggies and buckwheat.)

Keep your fingers crossed and if you participated in any studies for it with good results, please let me know if you are willing to help get the ball rolling.
Donyahna@aol.com is my email or post here.

I really believe in this as a huge help for women with PCOS. It is D Chiro Inositol and the body makes it on its own. The problem is that women with PCOS and people with Type II don't make enough of it. It really helped me and I think it could help others of us, too.

DianeJ · 12-18-2002, 06:28 PM

Oh, that's great! I was following the studies on this; it sounded so promising.

Thanks for the update. Hope it happens!

aeonflux · 12-19-2002, 06:46 AM

That sounds so good!!
Please keep us posted!

hugs!

carrie1602 · 12-19-2002, 07:22 PM

Great!

Keep up the hard work, and PLEASE let us know when it is available, either online or locally in health stores!

prettybutton · 12-19-2002, 09:55 PM

I have read every bit of information on this substance and I believe that this "drug" was dropped for financial reasons (an FDA approved drug is a big $ committment requiring big payoffs--what natural substance can carry that burden? Not even insulin).

Please do all you can to facilitate this process. We need it and thank you.

VitaBella · 12-19-2002, 10:22 PM

I'm just curious...since this substance is so good and you said it's naturally-occuring, can I boost the level in my body by eating any foods that contain it?

If so, I would love a list of places to start...I'm not too familiar with this study, but I'm willing to try anything! Thanks so much.

stlouiseb · 12-20-2002, 02:41 AM

Back when Insmed was still in trials with INS1, my endo made a comment about being surprised that the company was working on it. His opinion was that there wouldn't be any money in it because the same thing could be produced in an over-the- counter pill. I wonder if Insmed came to the same conclusion, and that's the real reason in was dropped.

Thanks for the update, Kittycat. It's good to know that there is still hope and the product may come out eventually!

StLouisB

Kittycat · 12-20-2002, 01:31 PM

Foods containing DCI include buckwheat, oranges, chickpeas, and legumes. The only problem is, to get the amount of DCI we need in order to bring ouir levels up to normal, you would have to eat 30 oranges a day, peel and all. The way Insmed was manufacturing it was by extracting it from buckwheatm which carries a high content.

Insmed carried several patents on this. They will be working with a nutritional company, partnering with them to manufacture it. I will be helping them by being a spokesperson of its efficacy. I'm willing to do whatever it takes to get to take it again.

The VP of Business Development did admit to me that they dropped the route of federalizing the drug as a prescription drug largely because of financial reasons. I don't know all the details. I heard that not everyone in the trials had as good results on iot as I did. At least, this is what my doctor said. many women did conceive while in the study, though.

I will keep you posted on how this is going and I also may need some of your help. I may start a kind of petition of women with PCOS who would acknowledge that they would be interested in purchasing the drug should it be manufactured. You see, they have to "sell" this to a nutritional company and assure them that people are interested in this.

aeonflux · 12-20-2002, 03:05 PM

Hi!
How does this "drog" work?
I mean what does it do in the body?
What does it effect?
Who can benifit from it and does it help at all with the hair and acne problems?

What can be helped if you are having af,say every 5 week,cysts on your ovaries,maybe not ovulating every cykel, high free testosterone and not IR?
Does it only help with regulating af or does it effect the hole endocrine system?

I am very curious about this "drog",but as you mentioned it does not work on all with pcos,so I just wanted to know what kind of pcos does it work better on?

Thanks! and I hope for the best!

VitaBella · 12-20-2002, 04:08 PM

Kittycat,

Thanks for the information! Lol...only 30 oranges a day? No sweat. Well...maybe for convenience, I'll wait until they come out with the extract.

Good luck on getting them to reopen production of the medicine! I really hope this works out, because I know you had good results on it and who knows, maybe I would too!

Kittycat · 12-20-2002, 06:15 PM

Ok, this is how I was told it works.

This is what happens when you eat. The food is converted to blood sugar and the sugar goes into the bloodstream. The pancreas is made aware that the blood sugar level has risen and it releases insulin into the system. The insulin molecules then pair up with the glucose molecules and this is where the DCI comes in. DCI is the substance that binds the glucose to the insulin, thus facilitating it into the cells. Without DCI, the insulin can't properly bind to the glucose and get into the cells. This process goes on in every person. It's been long theorized that women with PCOS (and Type II diabetics, for that matter) have a problem with this glucose/insulin "binding" process. When the insulin isn't able to bind to the glucose molecules, the sugar doesn't immediately get into the cells. The pancreas is signalled that the sugar is not getting taken up by the cells, and makes yet more insulin. The insulin eventually ends up "brute forcing" the sugar into the cell somehow. This is where the term coined "insulin resistance" comes from.

Studies have been conducted regarding the role of DCI in this process and tests were done in diabetics, normal people, and women with PCOS. It was found that the diabetics and women with PCOS tested having very little DCI in their system naturally. The normal people all had a healthy amount. It was then theorized that the diabetics/PCOS patients either make too little DCI or excrete too much of it. If we don't have enough DCI to help our insulin bind with our glucose, that could very well be one of the roots of our whole problem. The researchers then began searching to see what natural substances contain DCI. The researchers wondered if supplementing with it would improve IR and nomalize the body's metabolic functions. They found that DCI is in many many foods, but in small amounts.

There was a time in history when people did eat chickpeas, buckwheat and alot of legumes. (Foods with a decent amount of DCI) Nowadays, the western diet generally doesn't include these things. If we still ate them, maybe we would get the nutrition we needed and not have as much trouble. Hard to say. I made some buckwheat pancakes a few weeks ago and they were the worst thing I had ever tasted!! I just couldn't eat them!

Anyway, that's how it works in a nutshell. It is an all natural substance that your body should already be making. Chances are, you are deficient in it. BTW, the researchers did toxicity tests and found that even extremely high doses of DCI was not toxic to the body. (They used up to 15,000 mg and found no adverse effects) and I experienced no side effects when taking it.

I personally think that DCI is a major missing link for those of us with PCOS. It's been studied a long time and I think it could really help us. It really helped me, and nothing ever helps me! I've been taking met 2000 mg for 6 months now and haven't seen AF yet. It's not known exactly how met works, and it obviously helps many of us, but not all of us. It's helped me in other ways than getting AF, (I feel better and have less hair growth) but met is very toxic which worries me alittle. I'd like to try a met/DCI combo!

JulieC · 12-20-2002, 06:36 PM

Kittycat, this is great news! I've read about your experiences with INS1 and felt bad for you that something that worked so well for you got pulled. I hope they make it available somehow, for you if nothing else!

I just started taking metformin (almost a week now) and I don't know how it will work for me yet. It would be nice to know that an alternative was available if it doesn't. Wow, it must be a great feeling knowing you are doing something that could be so beneficial to all of us! Thank you!

katiwren · 12-20-2002, 06:47 PM

This is just a wierd connection to the comment about chickpeas, buckwheat and legumes having reasonable amounts of DCI. I recently seem to have developed a, well, not quite craving, but definitely a strong liking for legumes. I used to eat them occasionally, but now I seem to want them at least 2-3 times a day.

Do you think that might help me kittycat? Or are the amounts still too low to make a difference?

--KT

Kittycat · 12-20-2002, 07:17 PM

Hard to say Kati but it certainly can't hurt!

Doobie · 12-21-2002, 02:18 AM

Kittycat,
Thanks for your efforts!!! I'm so glad you've posted this. I was so intrigued to read that DCI helped you, you are almost my exact profile in terms of PCOS. I had been counting the days until INS-1 was released. If I can help in any way, such as writing a letter, email or signing a petition, count me in. I'm sure they dropped the study because it wouldn't generate enough revenue. We can't count on these companies to care enough to help the percentage of women who had success during the trials. The success rate they touted in their press releases seemed worth producing the drug/supplement in my opinion. And actually, a nutritional supplement is an even better solution for us, it will be easy to get and should be cheaper, too.

I have hope again. Any time frame for development and distribution?