What awaits me?

[Sjogi32]

Hi everyone,
I have been recently diagnosed with primary sjogren through blood tests (anti ssa and ana positive) and lip biopsy. My lip biopsy came back as showing total destruction of the glands.

I'm 32 years old. I'm just wondering what awaits me and if you have any advice?

[Joe S.]

Welcome to our forum. What awaits you is a long full life that may be different than what you thought. Life is full of challenges. Life happens while we are making plans. Enjoy every moment as best as you can.

in my early years of seaking a diagnosis, when a new symptom showed itself, my friend and family would remind my that like gas this would pass.

You can check our signatures to see what some of us are taking.

[SunshineDaydream]

Welcome to the forum, Sjogi32. It's hard to say what might await you as everyone's autoimmune disorder symptoms vary in terms of nature and severity. You will have to address things as they arise and try not to stress as that tends to make everything worse both physically and mentally. Easier to say than do, for sure, but you should make time to do things that help you relax.

One thing you can expect is a process of trial and error when it comes to treatment with medicine and/or supplements and conducting research regarding same. Have you discussed treatment options with your doctor yet?

You can also expect this forum full of knowledgeable and helpful people to be a great resource.   

[Sjogi32]

Thank you both for the reply!

So far I'm not on any treatment. My rheumy told me I can choose whether to be on 2 pills of plaquenil a day or not as the jury is out on their effectiveness. So I chose not to be medicated.

I'm now thinking that might have been a mistake as I'm getting symptoms. I wake up drenched in sweat in the mornings. Feel exhausted all the time and found myself choking on a paracetamol pill I tried to swallow for a headache last night. Not to mention shoulder/neck stiffness, diarrhoea and nausea first thing in the morning.

[irish]

Sorry that you are having so many issues. The dryness can be helped by taking Salogen or Evoxac to help stimulate some saliva. Takes time to kick in sometimes but does help. These meds will cause one to sweat and sometimes cutting the dose in half helps.

The Plaquenil is good to take as it is the first med to be prescribed for Sjogrens. It helps many of us in different ways. It helps with fatigue and body aches and some people think that it does help with the secretion of more saliva or decreases the dry eyes.

If you are having some dryness in your eyes the best thing to do is to get started on the Restasis which helps to decrease the inflammation in the eyes and keeps us from having such dry eyes. Also, can use over the counter meds for the oral or eye dryness. The Biotene company makes good mouth wash and oral gel that helps with the dryness. The Ayr company makes a nasal gel that helps with the dry nose.

If you can do searches on this forum you will find a lot of info that will help you. Good luck and welcome to our forum. Irish

[Sjogi32]

Thank you Irish.

The funny thing is the dryness I've had for years (i just thought I didn't drink enough) so although it's there, dry skin, eyes, mouth etc, the symptom that bothers me most is the fatigue. One thing I do get are horrible painful boil like spots on my chest and face but I've not seen others talk about this so I'm wondering if that's hormone related rather than sjogren related.

I will definitely look up all your recommendations, thank you!

[irish]

I would ask your doc to do some blood work to check the status of your immune system. People with autoimmune diseases often have immune issues also. Immune issues can cause people to have infections easily.

I was diagnosed with Bullous Pemphigoid in 2002 and then with Sjogrens in 2003. I still was feeling so lousy and was sent to an immunologist in 2006 who did more blood work and found Myasthenia gravis, Hashimotos and severely low t-cells and Low IgG level. The low t-cells and IgG levels caused my to have a lot of infections for so many years.

Having the immune deficiencies diagnosed and treated has helped me feel better infection wise but I still feel lousy from the autoimmune issues. Those red swellings on chest could well be related to infections or to allergies and would be wise to get this checked out. Irish

[Sjogi32]

Thank you I'll definitely do that! And thank you to those who replied. This forum is great!