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 experienced my first bout (or initial flare) of severely inflamed dry eye, dry skin, and mouth which had continually progressed over the course of a month and forced me to drag myself into several Dr.'s offices… pathology resulting in very positive ANA, but negative SS-A/B.
I have reached a point where the inflammation is starting to 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.
I get all of the above as well. The eyes don’t get better but everything else comes and goes like all of the other flair up symptoms. I know the frustration…I am often discovering that I need to adjust to a new norm with it, as far as tricks to deal with it.
I have a small, spa sized humidifier next to my bed. That helps a lot with the breathing. Using gel and drops at night is on-going but replacing moisture in the air make a difference.
I started using an in-shower lotion for my skin and find that it works better than normal lotions.
It is what it is sometimes but hopefully you have the experience that it isn’t always bad and you have some relief at times.
I do have spells/flares where the eyes are worse or the mouth is particularly dry, but there’s always dryness, it doesn’t go away. Number/ extent/ triggers of flares is different for everyone though, and how it progresses.
I second everything EnjoyLife has said, can only add that a warm compress on the eyes really helps too- you can buy specially made microwavable ones or just use a warm flannel.
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
That’s great if you’ve found a few things which help! Plaquenil can take a little while to work- the past discussions are searchable by topic if you want to have a look at others’ experiences with it.
Thank you guys for listening… sometimes that goes a very long way. Something I am looking into is Scleral Lenses for the eyes. The bandage lenses have been a huge leap for me, but these may be what I really need. So, maybe someone newly diagnosed out there will see this and get turned onto them for some dry-eye relief. Unfortunately, my dry mouth seems to be picking up for the break my eyes are getting… still working through that part.
I am sort of curious though, does anyone get relief from the Sicca Symptoms while on Plaquenil? Most searches seem discuss how Plaquenil relieves joint/fatigue pain associated with Sjogrens…