Sjogren's Syndrome Support Group

Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.

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janetwhite35 04/26/2015

Hi,

I was diagnosed with sjs about 5 or 6 years ago. My numbers started out low. My SSA was 1.35 and this year it was 8.6. Anyway, I was started on Plaquenil but couldn't take it because I was allergic to it and have never been offered anything else other than pain meds and I take valium for balance issues and anxiety.

Is anyone here on any other kind of treatment for sjs that if it doesn't kill you will make you feel better? I also have pretty advanced osteoarthritis and sometimes it is hard to know, if I even can, what is causing what.

Thanks

MButterfly 04/27/2015

The only other thing they use intermittently is steroids and of course methotrexate in some patients.

I can't take certain kinds of plaquenil either, but if it's coated I don't seem to have a problem with it.

WarriorGal 04/27/2015

I have never been on steroids or Plaq for SJS.

The only thing I have ever been prescribed is EVOXAC for dry mouth and eye drops.

CherryPie2010 04/27/2015

Hi Janetwhite35,
Besides Plaquenil, people with Sjogren's sometimes use Azathioprine or Cellcept if Azathioprine doesn't work. I have been on all 3 of those meds.

Best wishes,
CherriePie2010

mamawjo 04/27/2015

Hi Janet,

I was also diagnosed 5 years ago. I am on Plaquenil and Cellcept with Methotrexate and Sulfasalazine as I have RA also. I am on Tramadol for pain. I was positive SSA and SSB from the beginning with an ANA of 1:1280. Can't say that any of the drugs really help the symptoms of Sjogren's. Cellcept is supposed to help with organ involvement like kidneys. My SSA is still very high, but at times I show negative for SSB. I don't think rheumatologists are sure what helps with symptoms yet besides something like Evoxac for mouth dryness or Restasis or punctual plugs for dry eyes. We all know that Sjogren's is much more than that!. Let's hope they find drugs that can curb the symptoms.

Best Wishes,
Jo

janetwhite35 05/29/2015

Hi,

Can you tell me what your SSA numbers are and your RA factor numbers? And, can you explain what SSB and ANA are?

Thanks

How do you feel taking all those meds?

mamawjo 05/30/2015

Hi Janet,

My SSA is 125, but RF is negative, the value is only 11. SSB is the other antibody that is usually tested for Sjogren's (Sjogren's Syndrome B). My last level on that was only 14 which shows as negative.
ANA is short for anti-nuclear antibodies. It is a "panel" blood test meaning that they test for various antibodies: SSA, SSB, Anti-Smith, Anti-RNP, Anti-double stranded DNA and Anti-SCL 70 to look for other disease like lupus and scleroderma . If it is positive they give it a "titer" such as 1:320 etc. Your rheumatologist probably ran this panel for you to diagnose Sjogren's. One of the diagnostic criteria for Sjogren's is a positive ANA 1:320 or above.
Anyway this is all technical stuff. I believe you can still be diagnosed based on symptoms.
I have been on my concoction of meds for only 3 months and according to my rheumy it may be too early to be seeing results. So far only minimal improvement with joint pain. It sure isn't helping dry eyes, mouth or nasal passages. So I just keep using my eye drops and chewing gum with xylitol in it.
According to the Sjogren's Syndrome Foundation there are currently 16 medications under clinical trials to treat SjS, so maybe somewhere down the pipeline the FDA will approve drugs specifically for the disease.
Hang in there,
Jo

MButterfly 06/01/2015

Thanks for all that info mawmawjo!

Can you tell me more about cellcept? Is it a pill or an injection?

mamawjo 06/04/2015

Cellcept is in pill form. The ones I take are 500 mg each and I take 3 per day at one time. Cellcept is generally used for individuals who have had organ transplants. It is an anti-rejection medication, so it is considered an immunosuppressant. I have my CBC run every 3 months because it can lower your white blood counts and thus your ability to fight infections.

charlenerobinson 06/16/2015

I'm done with all the drugs they have been throwing at me for years and I'm trying to reverse my diseases with proper nutrition and water therapy. I don't want to be on one of those countless commercials asking if you ever took this drug and end up with a lawsuit. I'm not saying it is easy but my cousin reversed hers by following a very regimented program. It took her a few years but I'm praying for the strength to be like her. I'm glad to have people to talk with, all of you mean so much to me...

angee7 06/16/2015

I started taking Chloroquine 500mg in February, and it seems to be helping with my energy and fatigue levels.

So, I went to refill the prescription recently, and there is now a Nationwide shortage! Seriously!?!

Anyone else taking this medication??

I do not want to switch to methotrexate.

janetwhite35 07/04/2015

Mamawio, thanks for all the info. My SSA was only 8.6 and they claim that was high enough and yours is 125????

I do have an RF of 9.6 but neg for SSB. My Rheumy told me that many sjs folks have an RF factor but do not have Rheumatoid Arthritis.

Compared to 125 it would seem like I barely have sjs. That is just awful for you.

janetwhite35 07/04/2015

That is the generic for Plaquenil right? If so, maybe you can get the brand name or is that on shortage also?

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