The good Doctor Denise Faustman has just released further evidence on a pathway to reduce Autoimmune Cells.
This research result helps to underpin the justification for the Current Phase 1 clinical trial "BCG Vaccine"
http://www.faustmanlab.org/News/PressReleasePNAS8-08%20.pdf
I've been hoping she would let us know how it's going! Thanks for posting this. We can continue to be hopeful that Dr. Faustman may one day soon help all of us with autoimmune diseases.
Cathy
Great news! Thanks for the link.
nisha
I was just on the Mass General Hosp website reading about the Diabetes I research. I've always tried to find an estimate of approximately when the Faustman study would be completed (and hopefully a cure found for Diabetes I and perhaps SJS). On the Faustman site, I could only find a note that Phase I and II should each take 18 months. However, on this site, they said a cure may be found in 3 - 5 years! This is better than I had hoped for. Of course, we don't know if this study will even be successful, but apparently they plan to complete it in 3 - 5 years. I'm so glad that it's working so far! I'm keeping my fingers crossed!
http://www.massgeneral.org/diabetes/diabeteslaboratory_programtocure.htm (http://www.massgeneral.org/diabetes/diabeteslaboratory_programtocure.htm)
Yeah this Vaccine I guess is the biggest hope at the moment ! SO much is riding on it...but this latest research will give the Researchers nothing but more confidence.
If it passes Phase 1 I believe it will need all the money people can raise for it ! We cant rely on any Pharma suddenly willing to offer to pay for Phase 2 & 3...there is peanuts in this for them !!
Everything crossed here as well !!
nisha & kindandcaring,
Are you as surprised as I am that there aren't a lot of posts about this topic? I'm wondering if many people understand that this is (I think) as big of news for SJS as it is for type I diabetes. This is HUGE for us! The possibility for a true cure rather than another treatment is wonderful. It's so good to have hope. I think that it is hard to find SJS mentioned specifically on the Faustman website unless you really dig through the studies. But from what I recall (and I don't recall a lot these days!), SJS was the other autoimmune disease most likely to benefit from this "cure", if it works. Other AI diseases may benefit as well. Please correct me if I've misstated something. Brain fog dominates these days!
Thanks,
Cathy
I didn't take time to read the link yet but isn't BCG vaccine involved with TB???? Irish ;D
In know in the UK kids get their BCG vaccine at school after a skin test to check whether they've already developed TB antibodies. I never had a BCG as my Dad, whio was a surgeon, said that it was only 30% effective anyway.
I think the vaccine study is being based on how the BCG works as far as I can see. Do correct me if I'm wrong.
Take care - Scottie :)
Here's a link to the Faustman site. You'll have to read some studies under the research tab to find more about Sjogren's: http://www.faustmanlab.org/research.html (http://www.faustmanlab.org/research.html)
Here's a study about reversing Sjogren's in mice. This isn't the complete abstract, which I have read in the past and sounds great. It was at cureautoimmunity.org., but I can't go to that site now because I'm getting a virus notice that the site may harm my computer. I think reading through the articles at faustmanlab.org may give more info.
http://ard.bmj.com/cgi/content/abstract/66/6/812 (http://ard.bmj.com/cgi/content/abstract/66/6/812)
All of this research seems huge for us. The possibility of a cure and a reversal of salivary gland damage would be my dream come true. The fact that the drug is working on human blood samples is very exciting. Although most of the press releases relate to diabetes, the belief is that the drug would work on SJS and maybe other AI diseases as well.
Those of you that know more about this, please chime in. Feel free to correct me if I've misstated something.
Cathy
Quote from: jjj3 on August 28, 2008, 05:42:11 AM
nisha & kindandcaring,
Are you as surprised as I am that there aren't a lot of posts about this topic? I'm wondering if many people understand that this is (I think) as big of news for SJS as it is for type I diabetes. This is HUGE for us! The possibility for a true cure rather than another treatment is wonderful. It's so good to have hope. I think that it is hard to find SJS mentioned specifically on the Faustman website unless you really dig through the studies. But from what I recall (and I don't recall a lot these days!), SJS was the other autoimmune disease most likely to benefit from this "cure", if it works. Other AI diseases may benefit as well. Please correct me if I've misstated something. Brain fog dominates these days!
Thanks,
Cathy
Yes you have found out as well that this COULD be the One !
I think people do get study fatigue...meaning we hear and see so many studies with so much promise..yet still we are all sick at the moment...and some people dare to hope..rather than get to excited over repeated promises.
Yet I'm sure most people would still be quietly be hoping it comes good.!
All I can say is..once more...if this Vaccine proves successful in Phase 1..then everyone should get behind it !
So in less than 18 months we shall know if it can deliver on the promise...its one that is worth watching and waiting for.
Um I wont be uncrossing till then ;D
I did not read the link, but did read you guys' posts. I can say this is probably more important to Type I Diabetics than Sjogrens patients. My daughter is Type 1 and this means your insulin dependent. It is also the kind of diabetes that hits little kids, even babies. It's also called Juvenile Diabetes, even though my daughter was 27 when she got it. Skinny, active and healthy and all of a sudden she was down to 87 lbs and didn't know what was wrong. Imagine this in an infant of child where they can't tell you anything. This type can cause blindness, kidney failure and on and on.
I just wanted to mention this because some folks don't know the difference. I probably didn't before my DD got the nasty stuff. Most Type II diabetes can be controlled with diet, exercise and/or oral medications. Once your have Type I.....your pancreas has been destroyed and it's gone. (Unless you undergo a transplant.)
While Sjogrens is bad, or can be devestating in some people--I'll take the cure first for Diabetics Type I and then anything left over for Sjoggie patients.
eyeamdry
The original research of Faustman for her Vaccine was done for Sjogrens..this is where she first saw results.
So it is fair to say if it works it would be a Win Win for Diabetes/Sjogrens alike.
Though Diabetes would benefit first and Sjogrens would have to have another trial perhaps to prove its worthiness for approval.
Anyone Please correct me but..the only disease you could treat with a Vaccine is the one it has passed trials for ?!
Another good news article for anyone with or knows one with Diabetes ...Leptin !
Another approach discovered...mice have got it all !..now we have to wait to see if its for humans.
http://www.sciencenews.org/view/generic/id/35824/title/Looking__beyond__insulin
This whole area of research has me totally confused...in the 1970's, when I was diagnosed with Hashimoto's, polyinflammatory arthritis and Sarcoidosis over about 7 years, three different doctors in 2 separate hospitals, attributed my diagnoses to having had the BCG vaccine in 1969 (thyroid changes started early 1970). The vaccination site "reactivated" about 6 weeks before my first arthritic symptoms started and again about a month before the first experience with Sarc.
The site has re-blistered twice since then...once in 1986, coinciding with my first experience with dermatomyositis, and again in 2001, which I attributed to an increased stress level as I dealt with several personal and professional issues...I lost weight and had a general increase in all symptoms.
Luckily, in 1979 when my rheumy heard the story of the BCG site showing up again, he took pictures, and I was able to have them taken again in '86 and '01...since the site is bordered by three freckles, it's very evident that the blister is in exactly the same place.
eyeamdry,
I agree completely that type I diabetes is a terrible disease, and my heart goes out to your daughter and anyone suffering from it. I think because of the nature, severity, and number of people, especially children suffering from it, it's great that the first trial for the vaccine is to see if it cures Diabetes type 1. However, wouldn't it be nice it if worked for us too? When you get a chance, take a look at the links. You may want to even pass them on to your daughter. Even if this doesn't work for SJS, I hope it cures the many suffering from type I diabetes.
kindandcaring,
I believe (I didn't go back and re-read it though) the recent press release said it worked in "other autoimmune diseases" in addition to type 1 diabetes, so I'm wondering if it could be approved for more the diabetes type 1. If not, sometimes drugs are used "off-label" although they are not approved for whatever the condition. I don't know the details of how this works. Perhaps someone with medical knowledge can enlighten us.
Linda,
I'm so sorry about your experience. That certainly makes me wonder about the vaccine. I suppose a certain number of people will always react to any given vaccine, but that doesn't make it any easier to accept, especially given your experience.
Cathy
Linda
From what you said I can certainly get where you are coming from..!
As we all know for some Reactions to Vaccines do occur . However perhaps you could shoot your experience to the Faustman Labs..it seems very much so to contradict the theory...they maybe interested to know...and perhaps they could make more sense of it...maybe they are missing something..and you might have the piece.
Even if currently the BCG treatment is thought to work..we don't want it if it gives us more AI's making us worse !..I dont want any more ...
I remember my BCG..dont recall any issues..not to say Im any better than you..though rather we are all unique in our reactions to certain triggers...something that triggers me might not trigger the next person...its all I can think to rationalise...however it does make sense to tell them if you want..I reckon it would be a good move...Im thinking the info may help others similarly.
Your reaction reminds me of the lady who had the Zostervax vaccine for shingles...massive site reaction..yet this is after AI disease has manifested.
I am getting very confused by this. I wish we had a clearer picture. We seem to be wandering around in the dark a lot of the time.
Mayber I am just tired tonight and it will make more sense tomorrow. Sorry!
nisha
nisha
not sure what your not getting..
Linda has been told (by Docs) and may believe that her BCG caused AI's in her...this is BIG as currently the hope in the Fasutman Vaccine is to use BCG to treat/reverse AI's !...
Apologies if Im off the mark...maybe as you say it will be clearer tomorrow...