Mortality and Relapse Statistics

[crowneagle]

Does anybody have any hard facts on the relapse rates and life expectancy since the modern drug regimens were instituted. Most of my target sites are vital internal organs. I hear good stories and I hear sad stories. What's the real deal?

[Birdie]

Does anybody have any hard facts on the relapse rates and life expectancy since the modern drug regimens were instituted. Most of my target sites are vital internal organs. I hear good stories and I hear sad stories. What's the real deal?

I choose not to bleeve statistitchions. They can't get enough data to analyze. There are far too many variables with this condition for a relatively small data set to be relevant to any patient's circumstance. It's not like cancer, or diabetes, or ugly (I've got that also).

[debra]

C man, don't bother with those, as no one knows this, well except God. My point is this, they don't know everything about this sucky sickness, and most know nothing! Do u Realy want to trust their veiw on this as well? I'm not here according to the studies, as I'm not yet treated. Though I believe a cortisol problem I have may be saving me right now. Alysia and I talked about this. So I'm on natural pred? Nevertheless i wouldn't pay attention to these studies. They can't cure the common cold! So...... Birdie, ha ha.. I have this problem! True beauty is within,and u know this, and also are gifted with this........ Deb.

[drz]

There are lot of stats out there and they are generally shared for latest research stuff and presented at the big conferences the Weg experts attend. My Weg consultant is involved in lot of the studies at Mayo and has given me some info but the abstracts on the internet usually cover these pretty well too.

The biggest problem is a lot of the treatment techniques are so new that there hasn't been enough time yet to adequately evaluate how effective they actually are and what the long term effects might be for these treatments.

[crowneagle]

I beg to differ only because with the stats they are already keeping, it would fairly easy to work up model. One thing I see lacking is detailed prognosis guide even if it is published looking in a rear view mirror. It's not like there has been rapid progress in treatments. The lucky ones are those that very little internal organ association. For others, the disease progresses rapidly through needed biological systems. Chemo is nothing more than a stop gap measure; akin to kill me now or kill me later. We've got to kill you to save you. I'm venting here and I'm sure there are many people more experienced with this disease than me that know what might becoming on the horizon but through all my research, I have yet to see even the mechanism in which this disease works. My own grandson is a hemopheliac and they say that he has one defective gene and that disease will be one of the first diseases to be cured when gene therapy ever really gets off the ground. Anyways, I'm sorry if I am speaking frankly. Trust me. It's only out of frustration.

[crowneagle]

You've got to understand the mechanism of the disease before you can find a treatment. Maybe I'm missing something but I cannot find anything on the internet on the mechanism of the disease. Again, I'm just bummed about this today. I can't even start my medicine until the insurance company gives the hospital the OK to poison me. So, my treatment will be delayed a couple of weeks.

[Middlesista]

Insurance companies make me sick - the control they have over people and their lives

I have read and know personally that for some folks if you are admitted inpatient treatment is given. That is how I got my first Rituxin and it was because of the vision loss - vital organ

[crowneagle]

Actually, I don't really care about their view either but I'd like it when people give it to me straight. I don't get the sense the researchers are really giving anybody anything. Ya know, you've got this disease. We really don't how the hell it works and this is the treatment we have for it. It's not a cure and it might or might not help prolong your life. Might buy you some time. That seems pretty much it. That's all we got. Take it or leave it. You are one of the lucky ones Deb if you haven't been treated. I don't think I would live long without treatment.

[Birdie]

sorry if I am speaking frankly. Trust me. It's only out of frustration.

Wow, that was frustration? You didn't even use all caps.

[Birdie]

I don't think I would live long without treatment.

When diagnosed, I was told I didn't have more than a few weeks without treatment.

[drz]

There is some research going into understand the mechanism for how autoimmune diseases are triggered. The VF foundation and the research conferences publish several paper each year on latest research. I know of several studies that are on going as i have been in three of them so far through the Mayo Clinic. Some focus on what treatment is most effective with goal of find what works best for which problems with which kind of people. The use of RTX was limited before it was approved as a primary treatment tool. Plasma exchanges are another treatment technique that can be used more often if it proves to help outcomes. CTX duration have generally been shortened as research established that longer treatment duration had more side effects and didn't seem to change outcomes much. One research project now that I am involved is on staying on maintenance drugs like AZA and/or pred either in combination or separately and what the long term effect may be. We know there is a high relapse rate once people go off all maintenance meds but why do some people seem to do fine while most relapse. This is an important question.

It is true that compared to the medical costs of AI disorders compared to cancer, funding is minuscule because cancer has better public awareness and fund raising programs even though AI disorders affect more people and cost the public more health care dollars. That is some thing that several people on here have tried to work on. I think we all need to help campaign to increase research funding for all AI disorders when ever we can.

[crowneagle]

At least someone told you the way it was. The internet is full of this false hope stuff. They focus on the successes and fail to mention that it can have a bad outcome too. Harold Ramis died of vasculitis. He was a wealthy guy and all his money in the end bought him just a few short years.

[Birdie]

all his money in the end bought him just a few short years.

How about Steve Jobs, who decided to treat himself in his own way. He died very quickly when he had the possibility of years in remission. Wise decisions are the best choice anyone can make, money or not.

[debra]

There are people told they have a month to live, go on to live twenty plus more years. People told alls well go home and drop off. No doctor nor any amount of money is going to help onthat day. When its up, its up. I dont follow nor believe any statistics anymore,not with all the advancements in medicine,ect. I think the goal should be to feel as best as possible, while staying optimistic and hopeful, which for me was going back and forth. Not attitude wise, just trying hard to have acceptance regardless? Don't know how well I tryed to say this, but.... I respect also everyone has different belief systoms, oh boy, forg9 ???? Can't correct!!! Anyway I myself believe when God decides, well that's it,for this world. Deb.

[Pete]

There are three kinds of lies: Lies, damned lies, and statistics. I believe Mark Twain authored this. Fwiw.

[crowneagle]

There is some research going into understand the mechanism for how autoimmune diseases are triggered. The VF foundation and the research conferences publish several paper each year on latest research. I know of several studies that are on going as i have been in three of them so far through the Mayo Clinic. Some focus on what treatment is most effective with goal of find what works best for which problems with which kind of people. The use of RTX was limited before it was approved as a primary treatment tool. Plasma exchanges are another treatment technique that can be used more often if it proves to help outcomes. CTX duration have generally been shortened as research established that longer treatment duration had more side effects and didn't seem to change outcomes much. One research project now that I am involved is on staying on maintenance drugs like AZA and/or pred either in combination or separately and what the long term effect may be. We know there is a high relapse rate once people go of fall maintenance meds but why do some people seem to do fine while most relapse. This is an important question.

It is true that compared to the medical costs of AI disorders compared to cancer, funding is minuscule because cancer has better public awareness and fund raising programs even though AI disorders affect more people and cost the public more health care dollars. That is some thing that several people on here have tried to work on. I think we all need to help campaign to increase research funding for all AI disorders when ever we can.

We should do our own research. For me, vaccines were a huge trigger and I do not see much info on that because it is politically sensitive in the US. However in the UK, they've already warned people from taking flu and pneumonia vaccines when you have vasculitic diseases. Since I am a former contractor and landlord, I've also been exposed to a lot of environmental chemicals and molds spores. They are devoting millions to research but we see not a dime of it.

[crowneagle]

There is some research going into understand the mechanism for how autoimmune diseases are triggered. The VF foundation and the research conferences publish several paper each year on latest research. I know of several studies that are on going as i have been in three of them so far through the Mayo Clinic. Some focus on what treatment is most effective with goal of find what works best for which problems with which kind of people. The use of RTX was limited before it was approved as a primary treatment tool. Plasma exchanges are another treatment technique that can be used more often if it proves to help outcomes. CTX duration have generally been shortened as research established that longer treatment duration had more side effects and didn't seem to change outcomes much. One research project now that I am involved is on staying on maintenance drugs like AZA and/or pred either in combination or separately and what the long term effect may be. We know there is a high relapse rate once people go of fall maintenance meds but why do some people seem to do fine while most relapse. This is an important question.

It is true that compared to the medical costs of AI disorders compared to cancer, funding is minuscule because cancer has better public awareness and fund raising programs even though AI disorders affect more people and cost the public more health care dollars. That is some thing that several people on here have tried to work on. I think we all need to help campaign to increase research funding for all AI disorders when ever we can.

Very good post. I realize I'm new here but what's the chance of starting a new thread or whatever just focusing on what you just said. In the end, I think they'll find that this has all been man made somehow. We just can't continue to mess with Mother Nature forever. The human immune system is being asked to adapt in a short amount of time in what takes mother nature millions of years. In a normal world we would not be defective. After the holidays, I'll commit more energy to bringing myself up to speed. Right now, I'm fumbling around.

[debra]

Mr.c, good morning! I can feel you're frusteration, I know I've been there, and still visit this emotion so its normal! Im sure everyone here has.... Maybe the holidays r also adding to this? Mr.c, maybe try doing something just for u? Non weg related and please be more gentle on youre self... This sickness truly does SUCK, nevertheless try to add things,more just for you... Keep posting,venting everyone here understands.... Oh! Make a journal! Title it, weg dog, man u suck, but I will kick you're ass, soon enough, so don't get to comfortable,setting up shop in my body........threaten the son of a bi***!!!!!!!!! Deb.