New here with new diagnosis of primary Sjogren's Syndrome

[KySjoGirl]

Hello all! How nice to find a place where everyone knows what you are going through and talking about! I received my diagnosis last month after hoarseness for nearly 2 years.

I am a 39yo otherwise healthy female. I had my son in April 2010 and then suffered a miscarriage in August 2011. Not long after this, I had a cold. It was after the cold that I noticed I was very hoarse. It did not get better, and I visited my ENT who told me I was drinking too much caffeine and not enough water and was essentially chronically dehydrated. In June 2012, I had a root canal. The day after the treatment, I woke up with a huge, hot, and painful left parotid gland. I saw an oral surgeon who diagnosed the parotitis. He also noted that he could not express much saliva from my sublingual glands. He said that if this didn't clear up with the antibiotics, he would recommend pursuing Sjogren's Syndrome. Time went on, and we relocated with my husband's job. We are outside of the country at a naval station and do not have access to specialists. In June 2013, I returned stateside and visited my ENT. The hoarseness and dry mouth were still a problem. He agreed that we should check some bloodwork. My SSA and SSB came back strongly positive at >8.

I was then squeezed in with a rheumatologist who ran more bloodwork. Everything was normal except for an ANA of 1:320. She did not check my RF or complement levels. She said that it appeared to be a mild case and did not think I needed medication. Right now I am mainly plagued with the dry mouth and hoarseness. I do not notice dry eyes or fatigue. However,  after reading I am quite nervous with the increased lymphoma risk. I do occasionally have a bit of parotid enlargement. This is painful and usually more pronounced on the left side. I also find it occurs when I am having seasonal allergies.

I look forward to meeting everyone!  I am going to settle in and read the forums!

[Pisces24]

I understand your concern about lymphoma risk. It just raises your chances some it doesn't mean you will get it.
I am one of the very small percent that has SJS and several years later was diagnosed with NHL B-Cell Lymphoma in April 2012. This type though responds to treatment well. I had 6 rounds of R-Chop and had 4 spinal shots. The oncologist was very good with me and I had a clear PET in December 2012.

I know it doesn't help but you can't worry about what "may" happen. SJS is a very individualistic disease. It affects everyone differently.  I scored a 1 on my Schirmer's test which is very very dry eyes but they have never really bothered me. Others here have scored a higher # and it affects them much more. It all just depends.

BTW: My SS-A and SS-B are much higher than yours and my ANA was off the charts.

I wish I had a crystal ball to tell you what is down the road for you but everyone is different. My advice is to enjoy and just live your life. Take it as it comes.    Welcome and Good Luck.

[Joe S.]

While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.

With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.

Sip-Swish-Swallow are the three Ss of Sjogrens.

[Cassi307]

KySjoGirl
Have you thought of getting another rheumatologist's opinion? Plaquenil has been helpful for many here. As for your concern about lymphoma It does not happen to everyone. I know the thought is scary but focus on what changes you can do to help manage and prevent symptoms.

This is a good place to ask questions and vent. Good luck.

[Ark mom]

Hello, and welcome to the board!  I am so sorry about your diagnosis.  Hopefully you can find lots of info and support here. 

I was diagnosed a year ago at 39.  I have had more severe symptoms than you.  I think I have had this disease for 15 or more years.  My bloodwork is negative for all of the current tests, but my rheumy still thinks I have the disease.

My biggest symptoms currently are dry mouth (and subsequent hoarseness, too), pain, and fatigue.  Luckily, my doctor is treating me with drugs despite the lack of objective positive test results.  You should definitely ask about Evoxac or pilocarpine, both are drugs that help you produce extra saliva.  It has helped my dry mouth quite a bit as well as my hoarseness.  Please let me know if there is anything I can help you with!  Take care.  Hugs!!!

[susanep]

Welcome to the board, and I agree with the others about being on some medication that could help  you be more comfortable, and maybe keep yours from progressing as soon.

susanep

[KySjoGirl]

Thanks for the welcome!

Pisces24, congratulations on your wonderful PET scan results!! I have considered a second opinion as there are many things that were not able to be answered for me. We were only in the states for 3 weeks before leaving the country to come back to the base. Everything just seemed too rushed! My rheumy basically said that a lot of people only experience mild symptoms and will not progress to more advanced disease. She said that while there is no way of knowing if/how I will progress, she did feel it was okay to wait until I'm back in the states (December) before she sees me again. I really do feel like my symptoms are mild thus far, and I have noticed improvement since using Biotene products. With that being said, if Plaquenil would help I would like to discuss this with her. I have severe obsessive compulsive disorder (hand washing and germophobia), which leaves me pretty anxious most of the time. I have a few more questions but do not like typing on a touch screen, so I will wait until tomorrow. I hope you all have a great weekend, and thank you again! 

[gurs]

Def sounds just like SS......I dont agree with your doc..I think you should start plaquenil to "possibly prevent" further damage and hope control some of your issues....I think things just continue to get worse as we age )just my experience and opinion.

Get another Rheumy's opinion..see what they say. Can hurt right?


The summer allergens make me flare up big time..especially glands, teeth, headaches, etc...the SS is a nightmare to deal with. Stay away from all citrus fruits...they make my glands swell up like balloons!!

Gursie

[finallyadx]

Hi KySjoGirl - welcome to the board, although I am sad to hear that you have sjogrens, I am glad that you found this forum.  I have only been a member since January of this year after having been diagnosed myself (but having been sick for awhile).  You will find it helpful, supportive and very knowledgeable.

I would never try to instruct anyone on what they should do about their health, however, I do feel strongly that it certainly would not hurt to touch base with your rheumy via phone and ask her to start on plaquenil to see if it helps.  As gurs said and a few others I believe, plaquenil can help slow down the progression and can certainly help you feel better.  And by the time you come back to the states in December you should see a difference with the plaquenil - it can take 6 months to a year to notice a difference, everyone is different. 

I too suffered miscarriages, four, unfortunately - you would have thought that someone would have thought - hmmmm, something wrong here, but not quite.  I had to wait years before being diagnosed.    I am sorry for your loss. 

Sending you positive thoughts and prayers.  Keep us posted.

[KySjoGirl]

Thanks, everyone, for the warm welcome! finallyadx, so sorry you had to experience recurrent miscarriages. The docs seem to just brush it aside and urge you to try, try again. We were considering trying again; however, with the information of neonatal lupus and congenital heart block associated with ssa/ssb, I think we are going to embrace that one is enough. I will definitely call my existing rheumy on Monday to see if Plaquenil is an option. I think I will also go ahead and schedule a follow-up appointment with a different rheumy for December. I really feel okay right now but if the medication will potentially slow progression, I want to try it!

I'm more worried that I may have slipped through the cracks with my doc. I only had 2 weeks left in the states when I saw her, and she stayed after the clinic closed to squeeze me in. She ordered bloodwork and a baseline ultrasound of my lymph nodes in my neck (I have a chronically enlarged 1-cm node in my neck that has been there since I was 14). Her office staff called me to report that all bloodwork except the ANA was normal, and the ultrasound was normal as well. So, I never really had the chance to discuss with her a plan/what this means, etc.

[quietdynamics]

I had miscarriages.
My maternal aunt as well. She was a wonderful soul.

Sources vary on the frequency of miscarriages. The March of Dimes reports that approximately 1 in 4 pregnancies end in miscarriage; some estimates are as high as 1 in 3. http://www.hopexchange.com/FAQs.htm

Who can say the exact cause? Genetic testing is a mater of probabilities. Add on environmental factors; mother having a virus would be one. Paternal genes and health?  So it is complex and juggling , toward a hopefully informed discussion between parents.

Given the rise in autoimmune or is it the ability to better diagnosis that have caused the number to rise? (Aside from Diabetes):  I did put together a more thorough medical generational history for my children and then grandchildren, so hopefully, in the event they need an in-depth evaluation they will have information available to the doctors.

I was surprised to learn only this year of the amount of thyroid disease in my extended maternal side.

[grammad97]

Hello and welcome.
I am sorry about another younger person having this diagnosis. While I am happy you have found this group for support and info I am saddened another person has to deal with sjogrens.