I've had lupus for MANY years and was dx'd with SS perhaps three +years ago. I've had odd autoimmune type things for decades, like ITP (low platelets).
I've had some minor issues with catching colds when around young children or after going to the gym and forgetting to wash my hands immediately following, for a long time....a good ten years or more. But, it wasn't anything too serious, as I would usually just get a cold and it would go away in a few days.
However, since I've had the SS, things have gotten very weird in that department. NOW, if I'm around young children or travel or do anything risky in terms of germs...I often get a sinus infection and sometimes get bronchitis too. And I DO need antibiotics.
We travel to see family/grandson often and about two years ago, almost every visit I would get a sinus infection. I may have had nine that year.
So I began washing my hands like crazy and that helped a lot...reduced the frequency for 9-12 months.
But, they seem to be slightly increasing in frequency again.
I had my IGgs checked and was too low in two subsets. Most of my doctors think this is meaningless.
On another SS site I go to, folks with SS tell me it is common for those of us with SS to catch a sinus infection when around young children etc.
My rheumie says this isn't so. But he also didn't think my tests meant anything. Then, at a subsequent appt., he said they might. (He has been confusing and although he seems knowledgeable about lupus, seems to have little interest about SS)
For those of you with CVID...is this how things started for you? For those of you with SS and no known low immunity issues, do you also have frequent respiratory infections? Does anything help with these for you???? Thank you...this is getting frightening and urgent.
PS I meet with an immunologist again in about a week and might get something called the pneumonia shot challenge.
Dear Nomad,
I have Immune Deficiency. The pneumonia challenge is part of the diagnosis. I would advise you to see an Immunologist if the results of the Pneumonia challenge show that you are not receiving immunity to the vaccine.
Hugs, Elaine
I have an appointment with an Immunologist in approximately ten days.
My main question is, is it possible to have lots of sinus infections simply by having SS? Some people seem to think so.
Ironically, it is me, myself and I who insisted on the immune function testing based on something I had read.
I am very curious if SJ Syndrome all by itself can cause people to have respiratory infections.
I'm sure it logically could be possible to have sinus infections more often just from Sjs, due to it damage to the tissues inhibiting proper drainage...and any time you have improper drainage, you set yourself up for an infection (when sinus mucus sits around and doesn't drain like it should).
But that being said, the most logical reason you have increased sinus infections is because you have IgG selective subclasses immune deficiency. These numbers and labs ARE VERY IMPORTANT no matter what your doctor says, There are only 4 subclasses, so if you are low in two of them, that's HALF!! It is also important which ones are low...do you know this answer?
You need to see the immunologist, which I see you are going to in just a few days. He won't blow you off like the others. He knows that each subsclass is important, especially for sinus and other upper respiratory infections. YOU may be a candidate for IVIG. He will likely do some tests (like the pneumonia challenge that Elaine brought up) ad other vaccine responses. But the results won't necessarily keep you form getting IVIG if your IgG levels are truly low. He will likely repeat the labs again.
Please keep us posted!!
I'm wondering about this also...
I am experiencing my first sinus infection since diagnosis and things have gone seriously south - I'm halfway through a 10day course of Augmentin but feel as bad as I did when seeing the Dr. I have little to no free mucous, but painful ears, jaw joints and headaches.
Is this what it's now going to be like when I get an infection, or is this not the norm for Sjoggies?
I slept all yesterday, came home early from work today and am too tired to think about thinking...
Caroline
Hi Carolina,
For me, an infection also sets off an Immune Flare, which makes the experience of the infection (sinus, bronchitis, whatever) so much harder to bear.
So it possible that you will have MORE infections when you have an Immune System Disorder like Sjogren's, AND that they will be more painful because a flare is triggered.
I take a generic Mucinex every day to thin my mucus.
Hugs, Elaine
Ditto to what Anita said.
I have had sinus/respiratory infections since childhood. I was identified with an IgA deficiency in 1989. It progressed into CVID. I too, had the Pneumovacc 23 antibody vaccine or whatever it is called.
I could not produce one antibody when I returned 6 wks. later for him to check what antibodies I had developed . My Immunologist told me that when one is deficient in one area (IgA) or other, it is not uncommon to become deficient in others.
SjoDry
Hi Nomad,
I do not have immune deficiency, but I am prone to sinus infections. Nasal dryness and thick mucus, along with allergies and/or a viral infection, are the cause. What helps is using a neti pot at least twice a day if the weather is dry or if I have any congestion at all. And when I am feeling the beginning of an infection I do the protocol my allergist taught me:
S - saline rinse
A - afrin
N - nasal steroid
I do this for five days, then I cut out the afrin. I also have to take a daily antihistamine. I use Allegra and do not find it drying. Sometimes I suck on papaya enzymes, too, as that targets inflammation in that area. Drinking hot lemon and honey is helpful as it get things flowing. The No 1 things is the neti pot. I rarely have an infection any more.
They are miserable. I hope you find what works for you!
I forgot to mention Mucinex - also helpful. A friend of mine takes it 2X daily. I just use as needed.
Also a book called the Sinus Cure. It was recommended by my allergist and I got a lot of ideas there.
Many thanks everyone. I will try the SAN, Nymph. I use Neil Med Sinuflo. They have their own squirt bottle...so somewhat similar to a neti pot.
I do take Mucinex when things are problematic and its been helpful.
Sinus infections are doubly problematic for me, because I have facial nerve pain.
I'm getting tired of all the weird health concerns...but I know in my heart that if I'm not "on the ball," well....it could very well be a huge problem. I've seen this happen before. We must be our own health advocates.
That is why websites like this are very very helpful and valuable.