Author Topic: "sjogren's now a systemic autoimmune disease"  (Read 888 times)

Confused

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"sjogren's now a systemic autoimmune disease"
« on: December 31, 2019, 07:35:47 AM »

Happy New Year

« Last Edit: January 02, 2020, 06:17:07 AM by Confused »

Sharon

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Re: "sjogren's now a systemic autoimmune disease"
« Reply #1 on: December 31, 2019, 02:03:19 PM »
MY humble opinion:
IT'S ABOUT TIME!!! 
Sjogren's (+ RA): positive ANA, RNP, RNP-A, APCA. Severe eye dryness + inflammation, multiple sensitivities and allergic reactions, fatigue. 
ORENCIA, Restasis, Anti-inflammatory diet, Vit. D & C, Ubiquinol 100mg, Omega 3....

sixty

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Re: "sjogren's now a systemic autoimmune disease"
« Reply #2 on: December 31, 2019, 07:18:53 PM »
That could only help us, right? Maybe this sucky disease will be taken more seriously, and doctors won't be so quick to dismiss us.

Linda196

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Re: "sjogren's now a systemic autoimmune disease"
« Reply #3 on: January 01, 2020, 02:27:52 AM »
I was diagnosed with Sjogren's Disease 15 years ago, My Rheumy explained then that he referred to the syndrome as the form that presents with the classic dry eye/mouth and fatigue pattern, but when there was what he called "extra glandular (as opposed to systemic) symptoms, he called it a disease.

I don't think it's an entirely new concept in medicine, it's just that The Foundation has extended it's definition of the condition, making it more inclusive.
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
; and live chat at https://kiwiirc.com/client/irc.dal.net/#SjogrensWorld

Confused

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Re: "sjogren's now a systemic autoimmune disease"
« Reply #4 on: January 01, 2020, 08:16:19 AM »

Thanks Linda.  I was figuring this could not truly be an opening which is why i knew I needed to ask.

« Last Edit: January 02, 2020, 06:25:54 AM by Confused »

irish

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Re: "sjogren's now a systemic autoimmune disease"
« Reply #5 on: January 01, 2020, 01:27:32 PM »
It has been a systemic disease for many years but many medical professionals don't get it .For you men reading this not all will apply. If you have other issues with Sjogrens you are free to add a post. The other men will appreciate it.

I have  dry eyes that aren't too bad as I started Restasis & lubricating drops about 6 months after the dryness started in 2005. Dry mouth and lost all my teeth & wear dentures. Balance has been affected since 1996 with proprioceptive disorder. I have dryness in lungs with thick mucus and use mucinex along with an airway clearance vest. I also use nebeulizers and inhalers to help expand my air ways to help me expectorate the mucus. I have not had pneumonia or bronchitis since I started this regime. Also have dryness in vagina and need hormone creams,etc. Also issues in bladder. Stop and think how much time and money this takes for a Sjogrens patient. Then there are the yeast infections that occur in any orifice on occasion. And we are still walking and talking. We keep busy with all these creams, etc and it does add to our misery that no one sees 

Add the muscle aches and pains plus all the tendon inflammation issues that require doc appointments, rehab, surgeries, etc. These can spoil our sleep and our ability to get around at a normal pace plus the pain that affects us needing meds. Carpal and ulnar tunnel, etc.The spinal cord can also be involved at times.

The breast tissue is very often ignored. Lots of swelling and tenderness that we finally learn can be caused by Sjogrens as breast tissue is a secreting organ.The issues require several bra sizes due to pain and swelling changes and we often end up with doc appt and need more mammograms. Another added expense out of pocket and from insurance.

We head for the stomach and esophagus with our acid reflux. Here we add changing the way and often the place that we sleep, the medications, special diets to ease our discomfort and many scopings to see how things are looking plus sometime surgeries. See how this is adding up financially, emotionally, physically, spiritually, work related and family related issues. Right now I am getting teary just thinking about all the years involved with coping with this stuff.

Now, we get to the small and large colon. Is it IBS, ulcerative colitis, Crohns, Celiac, food allergies, gall stones, chronic appendix, which is  related to the mucus changes of Sjogrens along with the secreting issues of the liver or pancreas and GI inflammation. Also they are coming up with the BAM which is chronic diarrrhea caused by the bile acids that are secreted and dump into the colon causing the bad diarrhea. I have this and it is not all the time but it can be devastating. I get the feeling that the GI tract is just a breeding ground for autoimmune issues and lot of them are from Sjogrens. Here again we have expensive diet changes, medications like antibiotics, steroids and the many biologics and other meds to stop these issues in their tracks. Then we have all the time spent on the road to the doctor and many tests, scorings, many minor and serious surgeries. More time spent on this because it does prevent us from working. Diarrhea, etc.

At this point I am thinking central nervous system and thinking of all the neuropathies that develop and extreme number of nervous system diseases there are....all the neurologists people have to see, the scans, checkups and referrals to other neurologists because these diseases so overlap and are so hard to identify. More meds, equipment to help with ambulation, etc. The list goes on and on. There really are none of the symptoms that are more or less important because we all get a bunch of them that hit us at one time or another. Some go in hiding for awhile .

Just think of the fatigue that is chronic and can only be identified most of the time by what we tell people. They cannot understand how it affects our job performance, our ability to cook, clean house, buy groceries, endure another pregnancy, deal with spouses , children and inlaws and outlaws, not to mention our friends. Our social life gets to be low on the ladder because we can't get off the couch.

This is just a very list of our gifts from sjogrens and I have run out of ideas for now. But this gives us all an idea this darn stuff is systemic. It covers most all our systems and is an expensive OTC disease...then comes the insurance and rest of the bills.I have been lucky to accumulate a crew of great docs. They have their bad and good days but between them all I am taken care of pretty good.

If anyone has some thoughts please add to the thread. Irish
               

sixty

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Re: "sjogren's now a systemic autoimmune disease"
« Reply #6 on: January 01, 2020, 07:31:52 PM »
Irish, I wonder if it would be okay to stray just a bit from the topic in asking you how you got your doctor to pay attention to your dry lung issues.  I've been on albuterol and it doesn't really produce anything, or help my breathing.  I had pneumonia in the late 80's and I think that's when I started having the shortness of breath.  The timeline sort of makes sense.  My doctors haven't even referred me to a pulmonologist.  Next appointment I'm going to ask them for that. Thanks.

irish

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Re: "sjogren's now a systemic autoimmune disease"
« Reply #7 on: January 01, 2020, 10:36:40 PM »
What brought the whole thing on was the fact that I had an infection in my body called Mycobacterium kansasii. This is a form of non infectious (doesn't spread to others) tuberculosis that is acquired from the air, soil or water generally. In other words the TB is in the world around us and the usual people to come down with it are immune compromised. I was compromised as I was on Methotrexate for my Sjogrens. I also, had a condition that was not diagnosed until after I hd finished my one year of meds for the infection.

I was found after treatment of the kansasii to have extremely low t-cells plus lower than norm IgG levels. Both these conditions put one at high risk for infection. I really did not have a textbook case of the TB and it was found by accident by cat scan for another condition. The scan showed I had tubercles in my lungs, spleen and liver and boy the doctors at the University Hospital panicked.

I also have had asthma since 1981 but it isn't bad. I will have tightness in my chest and shortness of breath but never cough. After all the commotion of the TB was over I went to a pulmonary PA and she started me on nebulizers pif albuterol. I was already on steroids inhaler plus albuterol inhaler and ipratropium inhalers. I had been on the nebulizer for a month or two and just felt like it wasn't doing its job. I was still tight in my chest frequently and just seemed to have dry sputum that wasn't moving. When I went for my next IVIG and appt with my immunologist I asked him if it would help to add a couple of the 3cc plastic amps of sterile saline to the albuterol. You would not b believe the difference this makes. It helps moisten your airway and also helps to loosen to mucus.

I still don't cough much but sesem to be able to make myself cough some and move out sputum every day. It isn't a large amount but I think the mucus is thinner and moves in a more normal way. Sure helps me. Because I had those immune issues with the blood plus the asthma and Sjogrens my PA was concerned about my lungs. The main thing that added fuel to this fire is the  fact that I also have Myasthenia gravis which is another autoimmune disease that causes muscle weakness in arms and legs mostly and off and on in the muscles of the diaphragm. This affects the ability to have good air exchange and also adds to lung problems. All these health issues added together caused that nurse to write to Medicare and the insurance company and request that I be able to get a respiratory clearance vest. She didn't even tell me she was doing that. Low and behold I got the vest many years ago. This vest is usually used for cystic fibrosis patients. It does help me.

Now, after all that I am going to encourage you to see pulmonary. You may not get a nebulizer from your primary doc unless he totally understands the way Sjogrens affects the lungs. But be assertive with your doctors about your condition, symptoms, shortness of breath plus the thick mucus that you have in your lungs. Be aware that Sjogrens patients are also at risk for some other problems that are caused by the thick mucus plugging up and damaging the bronchioles. Try doing searches on line using phrases sjogrens lung damage. Not necessarily in that order but just keep trying different words and you will find more info. It has been so long since I have done a search on that so I don't know anything off hand. Maybe someone else will know one off the top of their head.

Maybe a search on The Cleveland Clinic Sjogrens lung issues   or  John Hopkins University Sjogrens lung issues. Hope some of this helps.. Good luck.


sixty

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Re: "sjogren's now a systemic autoimmune disease"
« Reply #8 on: January 01, 2020, 11:48:53 PM »
Wow Irish, thanks so much.  It helps me to get motivated when I hear of how your experiences have helped you.  I know it's a long haul and I sometimes wonder what's the point, but something keeps telling me that if I could just get some of the crap out of my lungs, I would feel so much better.  Sometimes I feel like it's slowly killing me.  I also wonder if there's any way doctors can tell if there is excess mucus in a persons lungs.  I've had xrays and they don't show anything and that's frustrating.  Anyway, thanks for your reply and I always am so grateful you are here and so willing to share.  I will research as much as I can take on line so I have something to tell my doctor.

irish

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Re: "sjogren's now a systemic autoimmune disease"
« Reply #9 on: January 02, 2020, 12:43:14 AM »
Just a little side note....I had this extra mucus in my lung for years and it would whistle when I breathed at times. The docs would say that I was having asthma and I would tell them I can breathe fine....it is the thick mucus just sitting in my bronchioles and fluttering when I would breath.

Go for it. You will feel better for sure and you will find a lot of info out there also. Good luck. Irish