Sjogrens patients subject to illness?

[markt]

Hi, thought I'd ask... just from anecdotal experience, do other Sjogrens patients seem to get sick easier or with more frequency than others?  That is, from more common viruses like influenza, common colds, etc.  Just wondering, as flu season is upon us... and it's the first time I have had to deal with Sjogrens and the associated medication for treatment.  Thanks!  - Mark

[Navigator]

Actually even though some of my white blood cell levels have been quite low...the answer for me is No ... I tend to not get infections...BUT when I do catch something it takes a very long time to get over it.   My primary care doctor said whatever I have in there is doing its job and pretty potent so even though there are fewer of them than ?normal?...as long as I am not getting lots of infections just let well enough alone.

I do find that if I go on a plane ...invariably I catch something.

[irish]

People with autoimmune diseases can be at higher risk for infections because they often have an immune deficiency as well. I am a prime example. I had symptoms and illness without diagnosis for decades and was always sick with infections. Doc would scold me for coming in so much.
Finally got diagnosed with Sjogrens and Bullous Penphigoid and kept telling for I was ill and having symptoms. They ignored me as though I was just a complainer.

I eventually had a complicated episode of illness and doctors not taking me seriously. Made trips to ERs and was really ill. They finally did a CT of neck and throat and got some of my lungs in the scan. They called me in a panic and told me to get in cause I had nodules on lungs. More scans and nodules on liver and spleen also. Blood work showed Mycobacterium kansasii which is non contagious form of TB but needed 1 year of 8 antibiotic pills a day. Finished that episode , by the way had MRSA at same time I was diagnosed with the
TB, so felt not very good.

I went to another of my specialists and told him just off the cuff about the TB infection. He hit the ceiling and sent me to a very good immunologist where I was then diagnosed with Myasthenia gravis, Hashimotos and he did testing of blood work for immune deficiencies. Lo and behold I had low IgG levels and severely low T-cells. I did not have HIV but I had autoimmune disease that was killing off my t-cells. I was in as bad a shape t-cell wise as a HIV patient. I was started on IVIG that would treat the myasthenia and protect me from infections.

Now, darned if I wasn't sick and was not complaining to get attention. Just to let you know we have to pay attention and keep on the trail of our illnesses all the time. I was ill since 1964 and finally got diagnosed in (age 60) 2002, 2003, 2006 and 2016 with my current 5 autoimmune diseases and 2 immune deficiencies. No wonder all the people with autoimmune disease develop such strong attitudes over the years. WE are in a fight for our life and a fight for quality of life. Good luck to all. Irish

[Jenny]

I always think it's odd that I NEVER get sick. Even when my husband or daughter are. I have had the flu once in 20 years and never get colds. Crazy. Not that I'm complaining of course.

[Nomad]

I do/did. An immunologist discovered a minor issue. I started washing my hands very frequently, taking lots of extra vitamin C daily and I take an Oil of Oregano Capsule if I'm around young children , fly in an airplane or if I have even the slightest cold symptom. It has had near miraculous positive results for me. I use Gaia brand. Our son is a school teacher and would get several bad colds yearly. He is using this method now and last year got zero (0) colds.

[Carolina]

I understand the question/concern.

I used not to get sick at all.  I had my first cold at age 25!  I 'thought' this was because I have a very strong Immune System.  My 'only problems' were conditions like eczema (severe until age 27) and other  things that weren't exactly infections.

Then that changed in my 60's, and I started having very bad winters, especially.  And I had bizarre fungal infections (like on the bottoms of my big toes, which cracked and bled for 4 years for before I found out they had a fungus and could be treated easily!).   I even had gastric upsets (which I never had before).  I was sick all the time with infections.

Anyway, it turned out that I had an Immune Deficiency for which I have been treated every four weeks for the last four years with IVIG.  And I don't get sick any more.  I only have outbreaks of coldsores, from time to time.  That virus will be with me for the rest of my life.

The BAD news is that my Deficient Immune System ALSO mounts an almost constant attack against my body (not with autoantibodies but probably with Cytokines) and so I have damage like Sjogren's (but not autoimmune), lung damage, hearing damage, bladder damage, anemia, IBS, temperature dysregulation, esophageal motility problems, and, most disabling, profound nerve damage in my legs and feet and Small Fiber Neuropathy in the skin of my upper body.

I think how our bodies deal with exposure to infections varies from person to person, and even over time for the same person.

At least that's how it's been for me.

Regards,  Elaine

[aussie mum]

Unfortunately, my experience is there's no hard and fast rule. Sometimes those with AI issues in my family catch what's going around, other times they don't.

One thing I've noticed when I do succumb to cold's etc, the worse the cold is, the better my joints feel (I have ankylosing spondylitis).
My un-educated opinion is that my immune system has something else to do, so while it's off fighting the cold, it's leaving my joints alone.
I know when my cold is on the mend as all my ache's return.

There's been some particularly nasty cold/flu and gastro bugs in Sydney the last couple of months and while I was exposed to it all and did catch a nasty cold,  I wasn't as badly affected as other (non-AI) family members.

[Nymph]

I have always been sick frequently and worse than others since childhood. I developed Sjogren's in my early-mid 20s. I still get sick somewhat frequently but better now that I take extra C and probiotics. I like the oil of oregano idea. I work in a school so prevention is a must. As I have access to everyone in the school, I have the opportunity to educate them all about handwashing! I'm excited for our moldy bread experiment. 

[vrystaat]

  Absolutely we get sick. I have been sick with infections since the age of 35 years. I'm now 75 years old. Influenza for me is quite devastating, because I get really sick. My most recent problem is recurrent acute sinusitis. I get an episode about twice monthly. Nothing seems to work. I've seen many ENT physicians, and nobody has a clue. I have seen an Immunologist, and he found that my gamma 3 was low. He thought it was unimportant. My last hope is with an Infectious Disease Specialist. I am on high end antibiotics all the time. Saline washes and Mucopirosin washings don't help at all. No Physician has looked for unusual organisms such as Aspergillus or tuberculosis. It seems to me that many Rheumatologists have no clue in severe cases, despite their specialty.
So I'm not optimistic.

[Nomad]

Nymph...I can't tell you how many friends and family have gotten great improvement using my method. And one of my docs admitted to me she was quietly doing it primarily to fight urinary tract infections. It seems the Oil of Iregano has multiple uses, but is actually best known with reference to preventing sinus infection. My son said he once got a bad stomach ache so now he pays close attention to the state of his stomach before using. I think many recommend taking it on an empty stomach, but honestly I do the opposite and always make sure I have at least a little something in my stomach first. My docs love the way I take it, but it does require constant paying attention to how I feel and my surroundings. I find it a miracle.

vrystaat...a fair amount of people with Sjogrens Syndrome also have CVID (immune deficiency) and I wonder if your doctor's are checking you for this. If you have this, you will need specialized treatment.  I seem to have a minor issue with an immune subset. Please read my posts. I've been very fortune to get a lot of improvement with colds and sinus infections by using preventative measures. Mostly I :
1. Wash my hands very often throughout the day and always before I eat.
2. Take a multi, other vitamins and extra buffered Vitamin C daily
3. Take an Oregano Oil Capsule (with a little food) if I feel even a little sick or am around sick people or little children or am going to fly in an airplane.

I use Gaia brand Oil of Oregano and get it from the health food store.
If I actually get an infection, I see the doc for antibiotics, but for me, this has reduced the frequency tremendously.

[cccourt1942]

Hi Mark,
  Welcome to the site---and condition!
  You didn't put your age, so i'm gonna estimate you are in your 40s.  I baseline that to say when I was your age, still in the workforce, I had "ordinary" sicknesses (bi yearly sinus infections--REALLY), maybe a flu or virus once a year, and stomach stuff yearly, not regularly.  I was NOT diagnosed with SjS at the time...but was definitely having symptoms.
   Fast forward to age 75, on SjS meds, and not going to a work place daily, or for that matter shopping w' large crowds, no...I am like Jenny.  I get nothing.  I take that back:  I have something about once a year or 18 months.  It's like it's a miracle---or reward for being old.  I have some conditions outside SjS, and some stuff with them. But real illnesses? No. 
   I do what's been suggested, wash hands frequently.  I take it a step further, I carry "alcohol swabs" (can get a drug store).  Neat square, flat packs and I wipe the palms of my hands when I am out to eat...and tho I know you aren't to use liquid on your phone, I do.  I wipe with the swab, wipe immediately with tissue of napkin frequently.  Another item I clean with them are my TV remotes. On vacation, I wipe the remote control FIRST.  I am not really O-C but am respectful of damage of germs.
  With messed up immune system, be SURE and have your flu shot.  Check for ones which are for current flus.  Also, pneumonia shot.  I have NOT had shingles shot...but should have.  I'm sure older ones here will advise that. 
   These are just a few things you can do to protect yourself.  Most of my physician's offices offer face masks during flu season. If you have that option--take it. 
   Best to you this flu/virus season..and for future ones.  Also, as you go forward and you come across preventive measures not mentioned here, share.  We are educable here!
ccc
     Good luck w' your first flu season & SjS dx.