So last time we went to the doctor, they said that a part of the cure is already out, the part relating to the pancreas. If so, what is that drugs name? They said you have to take it daily and its just one pill a day instead of every meal. If you take it everyday how long until you dont have to take it anymore? When will the cure be out for the lungs?
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Do scientists know when there is gonna be a cure? Is 1/2 the cure out?
- Thread starter enzo
- Start date
I've only heard before that Eli Lily bought the rights to a drug that was in development which would be in effect a synthetic enzyme, instead of the pig enzymes CFers rely upon now. That it's promise was to eliminate the handful of enzymes and instead provide a single pill. I don't recall it being once a day, though. I haven't checked it out on the net or the Eli Lily site, but I'm pretty sure it's not ready for release yet . . . .
ClassyMike
New member
liprotamase is the name of a enzyme that Eli Lilly has in its pipeline. it would be pretty awesome to only have to a take a single pill. does anybody else remember taking your enzyme in powder form?
CrisDopher
New member
Did your doctor really use the word "cure" enzo? That's irresponsible verbiage, especially coming from a physician.
There is no CF cure. Not now, not in the near future. The drugs that have been developed and are in the development pipeline are major leaps forward in CF treatment, of course. Some drugs hold the promise of reducing the effects of our faulty genes to such a minimum that the CF problems are put in neutral -- future cystics may be able to expect normal lifespans PROVIDED they stick to their daily regimen of exercise and medications.
BUT -- while future drugs may be able to neutralize or mask the CF, it will ALWAYS BE THERE waiting to come surging back the moment you stop taking your pills.
These medications are no more a cure for CF than insulin is a cure for diabetes.
There is no CF cure. Not now, not in the near future. The drugs that have been developed and are in the development pipeline are major leaps forward in CF treatment, of course. Some drugs hold the promise of reducing the effects of our faulty genes to such a minimum that the CF problems are put in neutral -- future cystics may be able to expect normal lifespans PROVIDED they stick to their daily regimen of exercise and medications.
BUT -- while future drugs may be able to neutralize or mask the CF, it will ALWAYS BE THERE waiting to come surging back the moment you stop taking your pills.
These medications are no more a cure for CF than insulin is a cure for diabetes.
Did your doctor really use the word "cure" enzo? That's irresponsible verbiage, especially coming from a physician.
There is no CF cure. Not now, not in the near future. The drugs that have been developed and are in the development pipeline are major leaps forward in CF treatment, of course. Some drugs hold the promise of reducing the effects of our faulty genes to such a minimum that the CF problems are put in neutral -- future cystics may be able to expect normal lifespans PROVIDED they stick to their daily regimen of exercise and medications.
BUT -- while future drugs may be able to neutralize or mask the CF, it will ALWAYS BE THERE waiting to come surging back the moment you stop taking your pills.
These medications are no more a cure for CF than insulin is a cure for diabetes.
Gee your full of optimism aren't you.
Yes we all know that we have to continue to take care of ourselves, he just wants to know what new technologies would make this disease more manageable than it current is today. While "technically" you may be right (Then again, who is to say a drug/system/whatever doesn't come out that just corrects the mutation all-together, a one-use fix if you will) what I get from this post is the search for hope, and I suspect that is something his doctor noticed too, which is why he used the lingo he did.
Besides, Humanity in general needs to do things constantly to survive, eating and breathing just to name a few. Will humanity ever be able to get by without food, without air? Personally, I would rather not put limits on technology.
Aboveallislove
Super Moderator
Enzo,
I think the key was that he said "near future," and there isn't anything right now that is a "cure" that is in the 5 year time frame for approval. But the drugs by Vertex are having the "effect" of a "cure" for many and those will be to you in 5 years. And in England they are doing a Phase 2 on gene therapy that would be a cure--replacing the defective gene. That I do think you'll have in your lifetime. It might take 20 years, but you're young and doing great taking care of yourself AND the new drugs that are making the gene work correctly will be in your hand (and body) in 5 years and that by itself will make your life span near "normal." Thus, you'll be all ready in 20 for the final "fix." And in science, especially CF science, the advancements are exponential--there's a name for it I can't think of, but it's like one they discovered the microchip, things just increased exponentially. Ditto on science.
I think the key was that he said "near future," and there isn't anything right now that is a "cure" that is in the 5 year time frame for approval. But the drugs by Vertex are having the "effect" of a "cure" for many and those will be to you in 5 years. And in England they are doing a Phase 2 on gene therapy that would be a cure--replacing the defective gene. That I do think you'll have in your lifetime. It might take 20 years, but you're young and doing great taking care of yourself AND the new drugs that are making the gene work correctly will be in your hand (and body) in 5 years and that by itself will make your life span near "normal." Thus, you'll be all ready in 20 for the final "fix." And in science, especially CF science, the advancements are exponential--there's a name for it I can't think of, but it's like one they discovered the microchip, things just increased exponentially. Ditto on science.
When I talk to my PCP or my Dermatologst or other specialists they all talk about a "cure". When we get into detail, they are talking about the new drugs from Vertax. They, like the rest of us, read the newspapers.
Enzo, you may be correct in seeing a "cure" in your future. If I were you, I would view it as the light at the end of the tunnel and do everything possible to stay healthy until that train arrives.
Bill
Enzo, you may be correct in seeing a "cure" in your future. If I were you, I would view it as the light at the end of the tunnel and do everything possible to stay healthy until that train arrives.
Bill
17 years ago when I was doing a clinical trial for PBA, with baited breath that this was a "cure" thinking it was right around the corner. One of teh researchers mentioned that if this drug they were testing worked it would only take another 7 years for it to come out. Really I was devastated I could not wait. The drug did not work and I learned that there is no one silver bullet for CF. There needs to be a multi step approach. NOw we are in the same position with vertex and hoping that this compound can give us all the desperatly needed respite from CF and if it can tip the balance in our favor then the other multi pronged approach to take effect(nutrition, exercise, balance of drugs and therapies).
It is working for G155 folks and if they incorporate all the above with the Kalydeco then they are in the running. Keep up the good fight.
It is working for G155 folks and if they incorporate all the above with the Kalydeco then they are in the running. Keep up the good fight.
A "cure" is a somewhat confusing word when it comes to CF. Since it is a genetic disorder, a real cure would require altering your DNA to get rid of the mutation. The "cures" in the works now (Kalydeco, etc) are actually treatments to either fix those mutations at the protein level, or allow the protein to be functional despite having mutations. So by my standards, the cure for those with G551D is here, and more are to come! That is, as long as the person continues taking the pills.
CyrilCrodius
New member
A cure will exist the day they find a way to effectively deliver something that goes inside the cells of our lungs and changes its DNA. Some things have been attempted, but they found out that it yielded poor results. Scientists won't know until it happens.
So far we can only reliably hope for something that corrects the production of CFTR and MAYBE eventually, something that reverses scar tissue to normal lung tissue. Because finding a cure is all good, but damaged lungs will still remain permanently damaged.
So far we can only reliably hope for something that corrects the production of CFTR and MAYBE eventually, something that reverses scar tissue to normal lung tissue. Because finding a cure is all good, but damaged lungs will still remain permanently damaged.