Hi all! I'm still having a terrible time coping with this illness and the "what ifs?" but I believe I will get there. I'm working on my attitude and being more upbeat. In the meantime, I find myself searching for hope of a cure or better treatment and that has led me to the NIH website clinicaltrials.gov There are a number of trials related to SjS, but I can't figure out how to find out the results of the ones that are completed. Can anyone help? I hope I don't sound too pathetic. I've always been one to have to learn everything I can. I'll work on living one day at a time, but as you can see, I'm not there yet.
Thank you all for your continued support! Have a great day!
Cathy
Hi Cathy,
I've been to that site also and had the same problem. Been back there 20+ times too (keep tryin' to figure it out) .
That's the trouble with us "gotta know stuff" type people...give us a riddle with no answer and watch us rip our hair out.
I've been thinking about you and hoping you are getting along okay. If you find anything interesting please post it here?
Janna
Hi Cathy :)
I've just had a look at that site but there seems to be an awful lot of 'link chasing'. I think it would be a case of really knowing exactly what you were looking for on it. (Maybe that's just my brain-fog - but it's not user friendly!)
I clicked on Skin and Connective Tissue Disorders, them on Sjogren's and then it lists the tests with either 'recruiting' or 'completed' before them. After that I got lost.
take care - Scottie :)
Janna,
Thank you so much for your response. Hopefully someone will come along and tell us how to find the results on that website (otherwise, the website is not all that informative!).
In my endless hours of research, I've come across a lot of research that could help us, but no way to tell how long it will take to be in practice, if ever. There are two different methods I've found of replacing the immune system (I believe you mentioned this once). There seems to be a lot of excitement from the MS community for this approach. The Faustman NOD mice/Diabetes type 1 study seems promising, but it is only in phase I for Diabetes, so I'm guessing if it succeeds, it would still have to be studied for Sjogren's. The last two newsletters from the Faustman lab did not mention Sjogren's at all, but mentioned the potential to treat other autoimmune disease. I hope this is simply because the other diseases are better known, and not because they've changed their thinking on the potential for Sjogren's treatment.
I think of you often too. You were so helpful and kind when I first posted as to how scared I was. Your doctor's comment that he believes a cure is on the horizon in 10 years or less is something I repeat to myself numerous times everyday. Does he ever give you any specifics as to why he thinks that? I'm really hoping something is found to improve saliva flow sooner rather than later (for more than 1-2 hours at a time, that is). In the meantime, I'm drinking my green tea (did you read that research?) and hoping for a cure or much better treatments for all of us!
I'll post whatever I find that is promising.
Thanks again,
Cathy
Thanks Scottie. That's where I get stuck too. It would really be nice to know the results of the completed studies. I don't think it's your brain fog - it's just the website!
Cathy
Can anyone out there enlighten us as to how to find out the results of the completed trials on the clinicaltrials.gov website? Can anyone share any promising findings they have found elsewhere? Even if it's just something positive for the future that your doctor mentioned (thanks Janna for sharing your doctor's comments in the past - I hope he's right!)? I'm trying to keep up the positive self-talk each day, and any promising future discoveries are so helpful! Thanks everyone.
I have been involved in a couple of clinical trials in my local area in regards to neuropathy. One reason you may not be finding results is because the trial goes through multiple stages that may take quite a long time. Once all the stages are completed the results have to be analyzed and then the results have to be written and published. One study here at LSU using Tai Chi to improve balance for people with pn has been going on for at least five years using different groups of people for set periods of time. When you see that a trial has ended does not necessarily mean the testing has ended. There can be multiple stages to particular studies.
Oh... that's good to know...and also really frustrating...I would prefer to have my questions answered right now.
Cathy,
Since I only see my doc. every several months I haven't had a chance to ask him more about his remark. At that time he mentioned that research about re-starting the immune system. I do think he knows what he is talking about and so I will try to ask him for more particulars the next time I see him Sept.
It is difficult to chat with these guys, they are too busy. Sure would be nice to bump into him when he's feeling awkward at a cocktail party!
Janna
Salsen - thank you for answering my question. That makes perfect sense. I need to learn patience in this experience. I'm of the type that I found out I have something, now I need to fix it, or at least I need to know when I can get it fixed. Obviously I haven't moved into the acceptance stage yet.
Janna - I laughed at your cocktail party comment. You're hilarious and I admire your sense of humor through this. I've been reading a lot about the research on re-starting the immune system. It sounds so promising, yet I'm wondering if it will ever be safe enough for Sjogren's, or will just be used for diseases that are immediately life threatening or crippling. Time will tell I guess. I know what you mean about doctors being so busy. If you do get a chance to ask him about it, please let us know what he says. Has he ever mentioned the Faustman research? Thanks again!
Cathy
Thanks Cat!
I am also a "fix it right now" kind of person. I think it is important to know at least as much about this disease as the experts... especially since lots of them don't know much.
We gotta look out for ourselves and each other. I am very grateful to have found this site.
Sending you (Cathy) and Salsen some love and moist-ness in all the right places!
Janna
Dear Cathy:
I'm so glad you started this post. Like you, I have not moved into the acceptance stage - I want to be treated, not "managed".
There are numerous reports that Rituxin (also called Rituximab) infusions result in remarkable improvement in xerostomia (dry mouth) which even the researchers called "most gratifying";
http://www.ncbi.nlm.nih.gov/pubmed/16283417
http://www.ncbi.nlm.nih.gov/pubmed/16882600?dopt=Abstract
http://www.ncbi.nlm.nih.gov/pubmed/17330280
(in this article the Rituxan shortened the disease duration for patients from 29 or 30 years to 4-5 years)
http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=17957371#CR93
At my first appointment at the Sjogren's Clinic in Philly, I told Dr. Bharadwaj that I wanted Rituxan and she was pretty shocked. She told me "first, I have to prove I have Sjorgren's (my bloodwork is negative), then I have to meet certain criteria, Rituxan is toxic, it's a cancer drug, it's not considered "standard of care", I can be "managed", etc.
Rituxan runs about $10,000 per infusion so I suspect the medical insurance industry puts up a huge fuss about paying for it unless you are at death's door (they should all try living in my body for a day). Some patients experienced serum sickness (which is pretty awful, I'm willing to risk it). Why not treat the patient aggressively at first, provided the patient is willing, instead of at last, when there is not much left to save?
Do you have the address for the Faustman lab doing the NOD/mice Diabetes I study. I think I will write to them and beg them to make me a "case study" on Sjogren's. I haven't been at this for very long, but I'm already so tired of struggling with each miserable symptom.
I am more than willing to be a guinea pig versus watching myself deteriorate.
Maybe that's my calling -
Best Regards,
Sue
Hey Sue,
Here's a link to some research stuff
Denise Faustman, MD, PhD
Massachusetts General Hospital,
Harvard University,
Charlestown, Massachusetts
Examination of human spleens for a Hox11 expressing stem cell involved in salivary epithelial regeneration
Yongmei Li, PhD*
University of Pennsylvania
Cellular dynamics in mouse models of Sjögren's syndrome
http://www.sjogrens.org/research/research.html (http://www.sjogrens.org/research/research.html)
Dear Janna Lee:
Thanks so much! Now to write a persuasive letter to get them to help me without sounding too pathetic! Just an interesting specimen. ::)
Sue
Thanks Janna!
Sue - I hear you. I'm still a wreck every second. I just got back from a chest x-ray to check my lungs. Once I get through all the tests (does that EVER happen?), perhaps my anxiety will be better. Like you, my blood work is negative. I just started plaquenil. I'm also worried about quality of life because I feel so miserable now. I'm not nearly suffering like so many here, so I feel bad about complaining at all. My mouth bothers me so much though, that I feel that my life will be miserable if it gets worse.
In the article you posted about disease duration, I read it as the patients who had the shorter disease duration, showed the best results. I'm not sure if I'm understanding it correctly though. I'm hoping they find something that helps all of us, regardless of duration.
Janna posted some helpful links to you. The Faustman website is:
http://www.faustmanlab.org/news.html (http://www.faustmanlab.org/news.html)
The fifth publication listed is the most relevant (I think). Look around at all the info, it's very interesting. If you talk to anyone there, please let us know what they have to say. I've also given thought to participating in a study but I'm a big chicken.
Here's a really interesting story about the immune system replacement that I thought was so uplifting:
http://www.hopkinsmedicine.org/hmn/W08/feature1.cfm (http://www.hopkinsmedicine.org/hmn/W08/feature1.cfm)
This has probably been posted here previously, so forgive the repeat if it has.
Please continue to post. We are all in the same boat and so many of us are still reeling from the diagnoses. I believe we'll get to a place where we calm down and can enjoy life again. We are just still in shock and mourning our health. I love reading the studies about possible future treatments. I hope I'm not being unrealistic in expecting something in the next 10 years that truly will make a difference in quality of life.
I'm anxious to hear what the Faustman Lab tells you. Well wishes to both of you - Janna & Sue.
Cathy
Dear Cathy:
You are right about the disease duration in the article I posted - I misread it (oops, brain fog, again).
The article you posted "High Time for HyC" is fascinating. Here is a thread regarding Stem Cells on this forum that is also very interesting:
https://sjogrensworld.org/index.php?topic=4696.0
Hopefully, somebody somewhere will want to experiment with me or I'll be the most rejected guinea pig in town!
Sue
Wouldn't it be fun if they found the cure while you are the guinea pig and then named the cure:
"Sue Serum for Sjogren's Syndrome"
I would love to have a shot named after one of us!
Sue,
I think Janna has a great idea for a medicine name. Please let us know if you get anywhere in your efforts to participate in a trial.
Good luck,
Cathy