Stem Cell Treatment for Sjogren's Syndrome

General
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Connie said:

You all sound so knowledgeable. I feel a bit inadequate. Having been recently diagnosed by my primary (who did not seem the least bit concerned). Should I be seeing a rhuematologist? and is this an illness that strikes women more than men?

Thank you all..................

Connie,

Beware of the Sjogren's Syndrome Foundation, they are not effective because the doctors who work with them and those who are on the Board are Rheumies and Dentists who are in bed with big pharma (one of those doctors was my Rheumatologist) so I know what I'm talking about. This doctor (who shall remain nameless) gets all kinds of "gifts" from the pharmaceutical company that makes the drug that she prescribes to her Lupus and SS patients, which is a drug used on transplant recipients because it turns off the autoimmune system enough so that the body won't reject/attack the new organ; these drugs open us up to getting a plethora of infections, and the result is sometimes deadly. They have little events that make very little money; the last one I participated garnished them with under $75,000dlls, they even had a Tupperware Event(!) . They have no answers to any questions even simple ones like "when and where is the next clinical trial?" When I asked them this question they asked me if I would do some research to get them the information. Does this sound like an organization that can help any of us?! Unfortunately, all new Sjogren's sufferers start out with them because we are desperate for others like us, (but you have this wonderful forum) as did Venus Williams, she even participated in their first run last year. They asked me what they could do with her and what they should do to contact her, when she first came out to the media with her SS diagnosis. Highly disappointing!

Stay positive,

Goddess

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9 out of 10 people who are diagnosed with SS are women and 1 out of 4 women in the US have SS (most of them undiagnosed). Scary, yes?!

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It would be really great if we could keep this discussion about stem cells and SjS… Please?

Maybe consider the Devil’s advocate…

I have a basket of meds I take, and not one of them by choice. Some to make me feel better, some to keep me alive. I just had two surgeries that utilized meds to make it easier on me and I thank God there was anesthesia so I didn’t have to endure it in agony. Without docs researching and educating other docs, where would any of us be? Personally I would rather have my doc educated by another doc, not some pretty pharma rep who has never seen my disease or knows how to pronounce it.

Yes I am ticked off about misuses, and the whole system, but nobody will listen without docs, and the bigger the name and more educated, the better. Keep in mind, the docs give up time in their practices and families, and often with patients, and asking to be compensated for that is survival. If somebody is breaking the law or being immoral, or in it just for money and not the patients, then call them on it personally, but just because a doc is compensated for doing something for a company doesn’t mean they’re evil or not helping patients. I know some amazing docs who have been compensated by pharma who have devoted their lives to patients. I’ve sat through seminars where they’ve educated other specialists and docs, and now those docs can help patients they couldn’t before. I get to write what I learned there and educate other patients with new information that gives them hope. Win. Win.

There is a website to show what they may or may not have made as compensation from a company, but where is the site that shows what they donate monetarily to the community, or with their time and presence? What about the time they spend personally talking with other docs that’s not compensated? There would be no way to create one, because the good docs do it and never tell a soul. That pharma money may just be helping fund the next big research project, getting a doc to spend 6 months in a third world country, getting disabled kids to a camp, building a hospital or clinic, or helping a patient get treatment they can’t afford.

I’m just suggesting we keep things balanced and educational, but also kind enough to assume innocence before guilt and not throw the baby out with the bath water. I may not like how the big pharma machine works, and I will never accept pharma money in my own job or outside of it, but I am thankful to be alive because of my ability to get the meds and educated doctors I need because the meds and docs exist.

JMHO. :slight_smile:

Ellen



Nomad said:
This website allows you to see how much money your docs have accepted from Big Pharma in recent years. It was eye opening for me.
http://projects.propublica.org/docdollars/
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Was hoping someone here had info on B and T cells and what implications this might have? Was excited to see the site mentioned, but still asking the question. Everywhere I research, B cells are discussed, not T cells. This is intriguing. :slight_smile:

Didn’t mean to infer that all docs are like mine. Sorry. Just that I’m three for three on docs with no clue. Headed to Johns Hopkins praying they can help. When info comes from a doc who can’t even spell Sjogren’s, it’s difficult to know what to believe. The specific parts of our immune systems that are awry are so important…

Ellen



SGoddess said:



Eschnak said:

I have wondered about the potential for stem cells an SS. However, maybe someone else will wander here and be able to answer a question regarding this particular study...

I was told by my rotten rheumy that SS is a disease primarily involving B cells. Same with Lupus. According to him, this is why the new biologics out there that are most effective are working on B cells, not necessarily T cells.

As far as I'm concerned, I don't really care if they're helping by affecting T cells, B cells, purple or green cells. All I care is that there seems to be some progress being made. With so many people saying contradictory things, I feel somewhat confused about the pathophysiology of this disease though. This makes research without a good doctor beyond difficult. Can they all really be right?

Must try out this site mentioned here. Thx so much

I don't write here much, but am a patient with multiple autoimmune diseases, and the last year has been very bad for me. I am a professional patient advocate which was the only job left to me when I got so sick. I'm genuinely afraid that will be taken from me too before they are able to come up with some kind of treatment to help us. I would be really interested in anyone's thoughts on these specific cells and what is really going on biologically.

Blessings to you all.

~Ellen
Dear Ellen,
Please read the section about Stem Cell and Gene Therapy; the information is straight forward and based on at least 20 years of actual success in Stem Cell Therapy and even more exciting, Gene Therapy which has little if no side effects and is long term (in most cases permanent) because it uses your own blood. The Immune Deficiency Foundation (www.primaryimmune.org) is a serious group that understands the immune system and the more than 200 immune diseases that are wrongly diagnosed or not diagnosed.
The more we know, the more we know and that knowledge will give us voice we need to be heard by an organization that has already done the "leg work" and is ready to help those of us who are suffering from autoimmune disease!
I understand that there is a lot of information out there and a lot of doctors who really don't know what to do with us, but there are also a lot of doctors who have dictated their lives to get to the truth and now is the time for renewed faith. Is it difficult to have faith when you are having flare-ups and it feels like your very life is being, literally, sucked out of your body; it is sometimes so terrible that you just can't see how you are going to make it to the next day.
This is hopefully a new day!!
Hoping your tomorrow is a good one,
Goddess
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Eshnak. That medical website serves a good purpose. It was revealing to me, but I don’t feel comfortable sharing the details. I have been blessed with many excellent doctors and all my doctors are in my daily prayers But a doctor with ulterior motives is a potential danger. You don’t have to read posts that are off topic. Other threads here have gone off topic momentarily or completely. Your choice to read or not or to post something back on topic. I’m grateful for this SS site ESP since this week was terrible with my illness. I’ve learned a lot, including the idea that hope is out there for a cure. Be happy/be well.

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SK said:

I'll tell you Liza, this is WAY over my head as far as grasping the entire content! So please realize that I have NO medical training what so ever! Be patient with me! ha!

I have no medical training either, but I refuse to take "NO" for an answer and you get a lot of those when you start asking questions about SS. So I have researched the hell out of the it and put my self on medical journal lists (Medifocus is the one that had the China Test Trial; that reads like a medical book, not easy to navigate, but one thing that having SS has shown me is patience when it comes to research.) So don't worry about me being patient, if I can help, I'm here!

Best hopes and wishes, Liza

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Nomad said:

Thank you for this! S Goddess and others with medically training/background/knowledge....can you break this down for us when you get a chance in simple terms??? I WILL go tO this other site you mention today or tomorrow. I got that Paleo book by Dr Sara B yesterday and gave myself a migraine reading all about the causes of autoimmune disease. (First chapters id book) Interesting!
Also bought the Wahls Protocol re MS. Fascinating! This stem cell stuff is over my head but I do wish to learn more. Many thanks.
Dearest Nomad,
Somehow I lost the trail of your replies, but I just wanted to tell you that I respect and admire your participation and honesty; when we are open and honest when it comes to what we are going through the more we learn and that's what is going to make the difference for so many of us! I just received the Paleo book by Sara B and am planning to tackle it this weekend (well some of it, anyway), so far what I saw is promising!
Have a restful weekend,
S Goddess
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Dear Nomad,

You are exactly right. Sharing good and bad experiences help to protect us from needless disappointment and loss of time; we really can't afford that, we have enough on our plates.

We are here to support each other and find out how to better gather information to move forward with a healthier future and a possible cure!

On ward with this fight!

S Goddess

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I concur!

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I am just so excited about this! I think we should take this to our Dentists too! Get the word out!

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Hi! Is there someone who can explain what the study means in layman's terms? I'm usually pretty good at this but have been dealing with brain fog lately. Is there someone in the medical field who would be able to tell how long it would take before this could be done legally in the US? I love hearing this positive news but I've been told it could be 10-20 years before we get to use these therapies. Seriously?! That's a loooooong time!