Part 1 Immune System Gone Wild Sjogren's National Conference 2013,Dr. Arthur Bookman

The Sjogren's Society of Canada had the 7th Annual National Conference in May this year. It was a learning experience that Sjogren's patients look forward to all year.  For the first time this year the conference was also an Accredited Group Learning Activity for doctors and provided Continuing Education credit for dentists.

We started the day with Dr Arthur Bookman giving us an overview of the criteria for the diagnosis of Sjogren's Syndrome. He described it as an immunological storm.  Dr Bookman is also to thank for the inspired naming of the conference. 

He told us that hypertrophied salivary glands are often seen in Sjogren's.  If the salivary ducts are injected with a tracer dye you can see damage and abnormal arborization.  

He also talked about the length of time it takes to get a diagnosis of Sjogren's Syndrome based on experiences of people who attended the multidisciplinary clinic at Toronto Western Hospital. It takes 27 to 31 months for the diagnosis and from 2.9 to 3.2 different doctors. This leads to patients being unhappy with the medical profession.  On the Devins Illness Intrusiveness Scale  Sjogren's ranks very near Multiple Sclerosis.

ScienceDirect.com

He also said that systemic treatments such as prednisone, hydroxychloroquine, immunosuppressants and TNF inhibitors are ineffective, though Rituximab is sometimes effective. It has been seen to improve dry mouth/salivary symptoms and dry eye and fatigue. Future treatments may include Benlysta and allogenic mesenchymal stem cell transplantation (Sun, Nanjing abstract 2557, ACR 2012)

Sjogren's Makes Life More Complicated

After 20 years with Rheumatoid Arthritis I developed Sjogrens Syndrome.  It is another autoimmune disease most recognizably showing itself as very dry eyes and mouth. It would have been called Secondary Sjogren's in the past because it developed with another autoimmune disease, but the classification criteria has changed recently.

                                                                           

Dryness is a problem

The dryness affects all areas of the body but is far more noticeable and annoying in the eyes and mouth. I use pilocarpine (salagen) in pill form for my dry mouth. It is a prescription drug. Without it my voice starts to diminish and I cough and choke a lot. It is possible to have a compounding pharmacy make up a mouthwash using pilocarpine but it has a very bitter taste.  I also use Biotene Oral Balance at night.

Since the lack of saliva makes your teeth more susceptible to decay it is very important to take care of your teeth well.  I read that using a night guard when you sleep helps with the saliva production because it is a "foreign body" in your mouth, so I got one. I also clench my teeth and get headaches and this helps with dryness and clenching.  You can put a re-mineralizing agent like MI Paste on your teeth under the nightguard to strengthen your teeth.  This. picture shows a whitening tray but it looks like my nightguard

Night Guard for teeth

You can also massage your salivary glands to help stimulate saliva flow. It works best on the large glands near the temporomandibular joint located in front of your ears.

At the last Sjogren's Canada Patient Conference I asked Dr. Yepes if Salagen would keep me from losing function in salivary glands and the answer was no. I did hear that there are usually some salivary glands spared. Up to 50% of your glands can be functional and yet you still feel very dry.

I added this picture because in the past my eyes were so dry that I would look at my computer screen with my eyes half closed because they were so dry and painful.  The dryness also made me go to bed early sometimes because dryness can makes your eyes feel so sore you just can't keep them open comfortably.  I tried punctal plugs (a doctor can plug your tear ducts so the tears stay on the eye) and they helped somewhat. In fact I have had them in my lower tear ducts for the past six years. Then since I was still dry I was able to try Restasis prescription eye drops and they worked for me. That was a break since they don't work for everyone. These drops contain cyclosporin and while they do sting a little, it's worth it for me. I get best results by putting them in my eyes  and then shutting my eyes for a few minutes.

Restasis

I use hormones too.  Dr Ann Parke has spoken at most of the annual conferences of the Sjogren's Society of Canada and is a leading expert on the subject.  She touched on this subject favourably so I am more reassured about the effects of hormones than I would be otherwise. Hormones help with the vaginal dryness and the frequent UTIs.

Sjogren's is different for everyone, but I find it almost a part time job just to care for Sjogren's Syndrome alone.
 
I just read today about acupuncture and Sjogren's in Julia's Reasonably Well blog about Living Well With Sjogrens    She has a great picture of acupuncture points and some useful advice too.

Also, I have found www.dry.org to be a good source of practical info from Dr Robert Fox, who is a leader in the field of Sjogren's Syndrome. If you look for research on PubMed you will find many papers credited to him.