Hi, just a bit lost on my journey to wellness? and wanted to reach out to those who have been there before. I just wanted to ask, what does recovery from SS/Sicca look like?
Me myself, I have reached a point where the inflammation has started subside, and the burning red-eyes, hot salty little tear puffs, foreign body sensation, etc. has left me and is no longer a bother. My mouth is still somewhat moist, but has definitely improved with pilocarpine. Every other aspect of my body is ?dry? though. My eyes stick to my eye-lids over night and leave irritation marks from where my lid margins rest on my eye (this is with the use of Refresh PM over night gel and occasional drops. My skin is flaky. My mouth feels wet, but the back of my throat/esophagus ?feels? dry? The air I breath feels a bit dry.
So? should I expect to progress beyond this? Or is this is it? just managing these issues, but without the inflammation caused by Sjogrens/Sicca? Not really sure what I have to hope for, and what others typically experience.
It sounds like you are coming out of a flair. You will have fewer and less severe flairs when you manage your illness. If you do not manage it, you will have more flairs that are more severe.
For dry mouth sip,swish, and swallow WATER. That is a good start.
Find a soap that does not dry out your skin.
Pain management: Don't Panic, Breath, and meditate.
For me coming out of a flare is just a general slight decrease in the excruciating symptoms. General "less" regarding joint pain, severity of dry mouth and burning sinuses, and fewer sandpaper blinks during the day to the point I may not have to apply any drops during the daylight hours, and fewer closecalls or erosions (I call rips) at night. Sometimes I even go a couple days where I have to reapply goop and drops at night but no erosions or irritation spots at all.
Dry eye is my most severe symptom.
In my experience thusfar, there is no "complete recovery" but "more manageable" is the goal. And what I have learned to be happy with.
Just wanted to reply, and share some things I have found following my introduction to Sjogrens and getting past my first "Flare up."
Yes, I am still uncharacteristically dry as far as the eyes, mucin, saliva, etc. In some of those respects I may still improve... not sure what Plaquenil will do for me since it's only been 2 months... But, I am also generally comfortable. With the help of moisture retaining Rx bandage contact lenses, my eyes hardly bother me... as long as I do the occasional drops to keep them conditioned. My mouth wasn't that bad really, but at night it bothers me... and Salagen, as well as other oral care products help keep me comfortable in that department. So, I am cheating to be as well as I am, but since Sjogrens doesn't play fair, neither will I. My family needs me too much. Thank you guys for sharing your experiences. - Mark