Possible new way to fight lung infections
- Thread starter Chaggie
- Start date
I know this is an old blog but this drug needs attention now. I was in the second clinical trials for this drug in June of 2011 and I had significant results. I had been going into the hospital every 3 months for the last several years. After participating in the study my functions jumped up about 8 points and I stayed out of the hospital for a year and 3 months. I am still doi g better than I was before the study and was wondering if there are any other patients out there that have been on this study and what their results were. I am disappointed that this drug is not getting any attention as it has already been proven safe for cancer patients for years and it has a huge potential to utilize a new way of killing off drug resistant bacteria in Cf patients until we can get a lung transplant or a version of Kalydeco comes out for the rest of us who despairingly need it. Please write on this thread and let me know if you have heard of this drug or been on one of the studies and what your results were.
Yes. You can find several studies and lots of information dating back to 2007 if you do a google search for Gallium Nitrate + cystic fibrosis. I put this message out here because everyone I have talked to has never heard of it or what it can do for patients with pseudomonas. We NEED to get the CF community to start asking why this is such a small study and why it is taking so long. Remember, this is a drug that has already been proven safe for humans and used for years in cancer patients. Please help me get the word out to everyone any way you can. I've never used these forums so any hints on how to spread this ASAP would be helpful. The only centers participating in the studies right now are University of Iowa, John Hopkins University and University of Washington. Please google this info!!!
sunshine39656
Member
I will definitely check this out. Neat!
That's right. It is a 5 day drip but in my case it was Really worth it. I had no side effects and after the 5 days you start to feel progressively better as your resistant pseudomonas is killed off. The gallium nitrate is stored in the fat in your body and stays there for months killing off pseudomonas that no other drug they have come up with will. I'm asking everyone to PLEASE read this information online. Check out the studies and start asking your CF caregivers about this study. If they don't know anything about it print out the info for them. We as CF adults have the responsibility to inform ourselves about drugs that have the possibility to extend our years until we get lung transplants or they come up with a cure. We shouldn't be waiting around for the next big thing to drop out of the sky. We should be pushing for things we see as new alternatives to the traditional ways of fighting this disease. This is a new alternative and it seems to be running under the radar only because of funding. There are studies they have done on this drug orally and as a breathing treatment that have stalled because of funding too that is why I'm pushing this out there. The results need attention.
kittencaitlin
New member
this is interesting. surprised ive never heard of it before. lets keep this thread going -- anyone else participate in these studies? i see numerous small ones have been done, like someone said above.
no mention of it on cff.org
no mention of it on cff.org
kittencaitlin
New member
ps one of the main reasons i have stayed anemic so long is because of this very issue: iron binding to the bacteria. i have b. cepacia which they theorize is even more "iron hungry", and we dont want to aggravate b. cepacia. all study literature seems to point to it helping pseud., but i wonder how it would be of help to more virulent bacteria where even fewer drugs are available.
Exactly. I don't see any mention of any other resistant bacteria except pseudomonas but it's probably because they have only completed 2 clinical trials. Right now they are focusing all their efforts on the next kalydeco, which is great, but we still need new drugs in the interim to help keep our lung infections under control until they can perfect the new kalydeco. I believe this drug has the capability to do that because it has already been used for years on people for cancer. We know it's safe. The question is, what can it do for our resistant bugs. Theoretically, this should take less time to push thru the FDA because it is a known safe drug for humans already. Please help me spread the word. Talk to your caregivers and other CF patients about this. Print off the info and give it to them if they have never heard of it. Go on CFF.org and ask why this isn't being funded as a "pipeline" drug. I'm definitely going to keep doing this because I know what this did for me. I want this for others too.
CyrilCrodius
New member
So it's not that bad that I'm a bit anemic then...
They used to give me iron supplements when I was on hospital on IVs. But that was very long ago though.
They used to give me iron supplements when I was on hospital on IVs. But that was very long ago though.
CyrilCrodius
New member
Apparently, Gallium nitrate is a bit too nephrotoxic. So they're testing with http://en.wikipedia.org/wiki/Gallium_maltolate
isabella Mendoza
New member
Where do we read about it? I am willing to go to the CF clinic in Dallas and Denver. Can a person just "take it"? Orally?
Is it only available via IV
Were you still on it for awhile or only on a few days.
Any follow up?
Were you still on it for awhile or only on a few days.
Any follow up?
Yeah its that damn pseudomonas that keeps us down every day. IF we could have less congestion we could make more progress!
LEts look into this more. DO you have any more info from the study I could show my doc?
A
Allansarmy
Guest
I think the forum maybe triple posting some of your replies, hope mine doesn't come out that way.
This article is very interesting to me. My son (16) gets about 6 infections per year and always has to be put on Bactrim DS as the main "go to" drug. He has cultured MRSA multiple times in his life. So basically when he goes into the hospital, they treat our room like the house from ET, red sign on door and Haz mat suites
This article is very interesting to me. My son (16) gets about 6 infections per year and always has to be put on Bactrim DS as the main "go to" drug. He has cultured MRSA multiple times in his life. So basically when he goes into the hospital, they treat our room like the house from ET, red sign on door and Haz mat suites
I was on it for a continuous 5 day iv infusion. They do that to establish a level of the drug in the system. Apparently the drug is stored in fat cells so it continues to stay in the body for a period of time after the 5 day infusion. In my case the first few days I didn't feel any better, but after 3 or 4 days I started to feel my lungs clearing up. They just felt more and more clear as the Gallium killed the pseudomonas off. Like I said above, I was going into the hospital about every 3 months for the past 5 years. After the infusion I stayed out of the hospital for a year and 3 months. My lung functions went up about 6 points, nothing major, but my point is that this drug kills a very common bacteria cf patients have in their lungs. The pseudomonas is not well controlled as cf patients get older because there are no drugs that currently kill resistant pseudomonas. This is a drug that works by tricking the bacteria into thinking it needs this component to reproduce but then when it uses this agent the agent destroys the bacteria.
I have been keeping tabs on the study and like I said, it has stalled. I've heard from funding, but I believe if enough people know about this drug and ask for the studies to go on, the money will be found for the studies. The trick is getting enough people to start asking for it. We need to push for this study to go on.
If you need information on this please do a google search on the Internet for Gallium Nitrate+ Cystic Fibrosis. Just be mindful of the dates of the pages posted, most of them are older studies. There is quite a bit out there to learn and share with everyone, cf caregivers and others with cf. also see the link above for gallium maltolate. This is the oral form I was discussing above. It looks like it could be a positive form and a better way to utilize the drug without the liver/kidney problems. Please just spread this information around! It looks like Washington State University is still listed as the main hospital where the studies are being conducted.
I have been keeping tabs on the study and like I said, it has stalled. I've heard from funding, but I believe if enough people know about this drug and ask for the studies to go on, the money will be found for the studies. The trick is getting enough people to start asking for it. We need to push for this study to go on.
If you need information on this please do a google search on the Internet for Gallium Nitrate+ Cystic Fibrosis. Just be mindful of the dates of the pages posted, most of them are older studies. There is quite a bit out there to learn and share with everyone, cf caregivers and others with cf. also see the link above for gallium maltolate. This is the oral form I was discussing above. It looks like it could be a positive form and a better way to utilize the drug without the liver/kidney problems. Please just spread this information around! It looks like Washington State University is still listed as the main hospital where the studies are being conducted.