One of the more common autoimmune diseases, Sjögren’s syndrome affects as many as 0.5 to 2 percent of Americans. Several medications currently exist to address its symptoms, and there are self-care strategies to make you feel better in the short term, but researchers are eager to find new, more effective treatments. Cutting-edge research in Sjögren’s syndrome aims to pinpoint its possible causes, as well as ways to cure the troubling, drying syndrome that affects mucous membrane tissue, especially the eyes, mouth, skin and vagina.
New Drug Approaches
The most fertile ground for research and development of new drug treatments for Sjögren’s syndrome seems to be Asia. Several treatments are being studied there, some showing promising results to treat dry eye and dry mouth associated with the disease:
Mizoribine (Bredinin), an immunosuppressant drug, one designed to quiet an overactive immune system, is available only in Japan and China at this time. One Japanese study published in the English medical journal Rheumatology showed positive results in improving malfunctioning salivary glands in some Sjögren’s patients, but was less effective in those subjects with a condition called intralobular fibrosis – an excessive growth of connective tissue on the lobes of organs.
Mycophenolate sodium (Myfortic), an immunosuppressant drug already used as a treatment to prevent organ rejection in transplant recipients, is being studied in a number of autoimmune, arthritis-related diseases, including Sjögren’s syndrome. One German trial showed the drug helped a small group of Sjögren’s patients, improving their dry eye symptoms and reducing their need for eye drops. In addition, at the end of the trial, their blood showed reduced levels of rheumatoid factor and other agents that signal inflammation.
Nizatidine (Tazac, Axid), an oral H2 blocker drug used commonly to treat excess stomach acid, is also being studied in Sjögren’s syndrome as a way to treat xerostomia, or oral dryness. A Japanese study compared nizatidine to famotidine (Pepcid) to determine if the drugs would relieve dry mouth. Nizatidine improved dry mouth, although famotidine did not. The study also showed that those who took nizatidine had mild improvement in related symptoms: the ability to chew, swallow and taste food.
Rebamipide (Mucosta), a mucosal protective agent, is currently in Phase II trials in the U.S. Approved in Japan, it is taken as a pill and is being studied for treating dry eye and mouth. Japanese researchers studied rebamipide in mice with Sjögren’s syndrome in 2008, and the drug showed effectiveness in treating sicca, or dryness, symptoms. After treatment, saliva production increased and the development of autoimmune-related lesions was prevented. Another Japanese study conducted in 2009 showed similarly positive results in boosting saliva production, and showed no difference in adverse effects between people taking the drug and taking a placebo, showing the drug is safe.
Targeting B Cells
Other research efforts delve into the possible roots of Sjögren’s syndrome. What factors cause the body’s immune system to malfunction and attack glands, drying body tissues?
A recent Dutch study published earlier this year showed that development of targeted biologic therapies for Sjögren’s must attack B cells – a type of lymphocyte, or white blood cell. The researchers reported that depletion of B cells likely leads to the restoration of saliva production, and helps treat other, non-gland-related problems associated with Sjögren’s syndrome, such as skin disorders or neurological problems. New biologic drugs developed to target these cells should be studied further, the researchers note.
I don't see a way to directly communicate with you without my email address going out to everyone, so let me suggest that you visit dry.org and sign up for their e-mail list. The site was founded by David Dryden who also lives with SS. I get lots of very useful information there and occasionally participate in the discussions.
Rick
.it does sound like ss. Dry eyes..mouth..etc. for me
.the itching I have started 2 experience. I use creams rub well on skin the moment it starts and wear clothing that will keep moisture in at bedtime is best 2do this.of course part of skin itching comes on the more we age our skin dries easily and with skin gets thin & easy 2 tear. Also can use a cortisone cream.hope this helps...m.ann
has SS. She has dry eyes, gritty eyes, dry
mouth,no taste, joint pain, etc.
But the part that concerns me most it the skin itch and discoloration on her legs.
A good cream will help, but it always goes
back to itching. It also at times bleeds from
rubbing with towel.
Any one with this problem??? Any help????
Also for my OA i have found that heat really helps alot. I use socks at night, cotton hose or stretches under my jeans and for my back pain i use a heating pad at night. Everymorning stiffness is relieved with a hot shower.. M.Ann
Every year I have 1-2 new issues which arise. I have horrific Migraines, Polymyalgia Rheumatica (comes and goes), Fibro, Restless Leg, Hiatal Hernia, Peripheral Neuropathy, Ganglioneurapothy, usually have Shingles 2 x per year, PHN, RA.
I usually have 1 surgery/year as a result. I am on multiple medications to treat the symptoms. And they do help, somewhat.
The good thing: not only does my family and husband support me, so do my neighbors and they look out for me as well.
Do I have pain? Yes. I live with burning, stabbing pain everyday which never goes away, even with my medication. The left side of my face goes numb and my hands and feet are cold 95% of the time. I am exhausted 100% of the time although I am on a vitamin regime, I cannot remember simple words many times while speaking - which is embarrassing because I am a professional who still is employed full time and needs to utilize a repertoire of words. My vision is shot, I have no saliva unless I take medication and 50% of the time I cannot taste my food.
So if there are new meds on the horizon, then I say "Congratulations" to the ones who have gone above and beyond in research to accomplish this!!!!♥
And for those who say they have Dr's who don't listen, I say change your Dr. After all you are the paying customer. Go find a Dr. who will listen, even if you are on a HMO - you can still do this! Make them listen.
Yes all of this can bring me down a little bit if I dwell on it, but No I do not suffer from depression.
HOWEVER:
I speak about SS every chance I get: with strangers, with persons at work, at the gas station; it does not matter. I try to educate everyone. Especially when we have our walkabout - this is really a good time to accomplish this!
Ghandi said, "Be the change you wish to see in the world." It takes one person to make a difference. I believe each and every one of us can BE that difference!
I'm also on the Sjogren Syndrome Foundations Facebook page. Many blessings & gentle hugs!
It's a shame that they only concentrate on the dry eyes/mouth because SS involves so much more. They don't tell you enough because in the beginning I only had SS, now my test are coming back as if I have another autoimmune disorder besides the SS and that's tough to deal with.
My oldest daughter has a class in high school for Care/Prevention Athletic trainers and they discussed SS one day. A friend in class with her has it. The teacher discussed the dry mouth--she described it as having a mouth full of cotton balls. My daughter did it and she asked how she felt--she said awful, dry mouth, unable to breathe well. It then clicked for her when I talk too much and state my mouth is dry what that feels like.
It's hard to realize that this is what I have to look forward to as I get older. I wish they would develop more things to help deal with the pain and issues involved.
Any help you can give would help. Thank you. I know that God has us covered and all of us talking about it will help someone else.
I my SS also did not show up on my blood work. You need to see other specialist for your different symptoms. You should see an Opthomalogist for your eyes and they will probably put you on Restasis and it will take a while to work but don't give up, in the meantime use lots of artificial tears vials and warm compresses at night and get a humidifier.
I was referred to a Otolaryngologist and he took a biopsy of my saliva gland which came back positive for SS. As I mentioned on my previous note, you have to do your own research and be your on advocate and find good doctors. I also was losing a lot of hair so I am also on hair supplement with has diffinately help my hair grow back. Good luck to you and anyone else out there. You are not alone so don't give up!
I have been doing a lot research on supplements and been trying to do everything to help my symptons. I have a physical job and thought my life was over. I had so much pain, fatigue and stiffness and I was becoming addicted to pain pills. So I started taking something called Complete Joint Effort by Andrew Lessman. I am in week 6 I almost have no more pain. My stiffness has been cut in half. I mean my hand would hurt so much that I could hardly hold things and step in out of vehicles with confidance. I have been on Restasis and a year later it has helped a lot with my eye dryness. My last new discovery is TheraBreath with is sold at Walmart and Target. It helps with the bad breath and the dry mouth better than the other leading brands. I hope this my help others with their symptoms.
DOES ANYONE ELSE HAVE DEPRESSION? I WOULD LIKE TO BE ABLE TO CORRESPOND WITH SOMEONE ON A PERSONAL BASIS WHO IS DEALING WITH THIS TOO. I TRULY NEED FEEDBACK FOR I FEEL SO ALONE!!!
TEST. I JUST WAS DISCHARGED FROM A WEEK IN THE HOPSITAL. MY SJOGREN"S BLOOD TEST WAS HIGH AND SYMPTOMS FOLLOW. BUT I WAS MISDIAGNOSED WITH ANOTHER DISEASE AND HAVE FOLLOWED UP ACCORDINGLY SINCE MAY 1992..I HOPE MY DRY EYE TEST PROVES HELP FOR ME. MY RHEUMATOLGIST WILL THEN START TREATMENT. MUSCLE PAIN IS TERRIBLE..I AM UP ALL NIGHT
FATIGUE..TERIBBLE HAVE CHOKED , FALLEN ASLEEP WHILE EATING.
>>TO ALL WHO WORK TO HELP US <.'MY DEEPEST THANKS !' (LG PRINT-LEGALLY BLIND)
It is only through proper education and public attention that people see the seriousness of Sjogren's and feel compelled to donate to research.
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