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Hope

Started by Anastasia, July 09, 2016, 09:42:45 AM

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Anastasia

July 09, 2016, 09:42:45 AM
I wanted to share 3 things that I came across recently that should give us all hope.

1. A Dr. Burt at the Feinberg Medical School at Northwestern is, with FDA approval, doing stem cell treatments for autoimmune diseases.  He has a Sjogren's protocol that has recently closed. We should watch for the outcome.

2. I had a recent follow-up at Johns Hopkins and the doctor mentioned that they are currently in trials with two new drugs for Sjogren's that show promise.

3. My niece (PhD Harvard) works for research company that has a biologic in phase 3.  It's an injectable treatment for lupus but should also be effective for interferon related autoimmune disease.

So when it sometimes seems hopeless, remember that there appears to be more promise now than ever. 

Anastasia.

warmwaters

#1
July 09, 2016, 10:03:44 AM
Less specific, but I see a rheumy who is familiar with the latest Sjogrens research, and she emphasizes that there are a lot of new treatments in the pipeline, and that we just have to "hang in there" til some of them become available.

Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

Sharon

#2
July 09, 2016, 01:01:27 PM
Thank you for the uplifting post Anastasia!
It would be helpful to have some sort of timetable...
Any idea when the next treatment may be made available to the public?
Are we talking a year, a few years, a decade or longer?
Sjogren's (+ RA): positive ANA, RNP, RNP-A, APCA. Severe eye dryness + inflammation, multiple sensitivities and allergic reactions, fatigue. 
ORENCIA, Restasis, Anti-inflammatory diet, Vit. D & C, Ubiquinol 100mg, Omega 3....

Anastasia

#3
July 09, 2016, 06:28:24 PM
Sharon - not sure of the timeline. Dr.  Burt's work is ongoing - you can get more information if you google him. It seems to me that stem cells may hold the key for autoimmune disease treatment but there are many unreliable cell stem centers. This one seems to be on the right track.

I sense that the Johns Hopkins trials are in early stages - in fact, they may still be enrolling people, so their treatments are a while off.

The new lupus drug that's in phase 3 must be closer - I will find out and let you know. 

Take care! Anastasia.

bloodless

#4
July 12, 2016, 10:51:53 AM
Good report. My doc just mentioned there weren't many drugs approved for sjs.
I miss the good old days. Things were more like they used to be back then.

Sjogrens, Lupus, Fibro, GERD

warmwaters

#5
July 12, 2016, 03:04:00 PM
Some new Sjogren's drugs are in Phase II trials in the US.  But think in terms of 2-5 years, not next week  :(

But hey, I'm in my 50s, and so if there were something to help  by the time I'm 62, that would be a good thing. 
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

SjoGirl

#6
July 13, 2016, 04:26:02 PM
 :)
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.
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