Sudden Extreme Dryness

[Cindy]

For those of you suffering from Sjogren's for some time, did your dryness suddenly become worst (eyes and mouth at the same time)? I'm asking because since Nov my dryness has been really bad compared to how I was. I am having pain in my parotid glands really bad. My eyes are in really bad condition too. I am terrified because I feel my Sjogrens is advancing all of a sudden super fast. It has been almost 11 years since I started looking for answers. Up to this past Nov my main problem was IC, which when it flares is horrible.  If you don't mind sharing how long did it take for your symptoms to start affecting your daily life and interfering with your work/life?

[Nomad]

Yes. I was diagnosed with Sjogrens 10 plus years ago. In July I was sick with something else. Not sure there is any correlation, but in August I developed mega dry mouth. Previous to this, my SJS symptoms were kind of mild. Just used my Biotene mouthwash and toothpaste. Had some issues with fatigue and some body aches. Mild dry eyes. But since August, the dry mouth has been extraordinarily difficult. I also have weird bouts of too much "saliva" at times in the front of my mouth, but it's more like water and doesn't particularly help the bad dry mouth and just makes me paranoid that I will drool. It went from a mildly annoying illness for a good ten years to a difficult illness inside one month. Very fast.

PS I just realized our time frame is about the same.

[meirish]

I had symptoms of many autoimmune diseases since age 22 and turn 80 soon. I did not get diagnosed with Sjogrens til 2003 despite doctoring a lot.

I ended up losing all my teeth over 15 years and dentures 2004. I had 3 carpal tunnel surgeries caused by scar tissue from Sjogrens.

I had autoimmune disease that caused me loss of hearing in my right ear 1997 and left ear is half deaf with a hearing aid. I have Myasthenia gravis (autoimmune) diagnosed 2006 symptoms for 30 years. Hashimotos diagnosed in 2006 with symptoms for 40 years. In 2002 I was diagnosed with autoimmune skin disease. On IVIG from 2006 til May 2022 high dose 800 ccs once a month.

I had trouble for years...arthritis, bladder issues pain, treatment at Mayo clinic 4 times related to autoimmune disease. I have had problems with my parotid glands for years. A couple of times horrible pain. It helps to place warm packs or warm hot water bottle on them and then massage gently to help open ducts to move the thick mucus. A person can also get stones in all the salivary glands and ducts with Sjogrens.

I had right submandibular gland removed in 2009 for various reasons. If you don't have a Ear, Nose and Throat doctor I advise you to find one. These doctors deal with Sjogrens, dryness, inflammation, stones, pain in the ducts, etc. My doctor stuck with me for over 27 years and we went through some rough times together. We lived through a lot of tough times prior to diagnosis when my symptoms were driving us both crazy.

I had severely low T-cells (related to immune deficiency) and developed type of TB that is non contagious. Was on 3 different antibiotics 8 pills a day for one year. I had lesions in lungs, liver, spleen plus MRSA when diagnosed with both. Arthritis then severe nausea that woke meat 5 AM every morning for years. I was an RN and worked sick a lot and had to take leave of absence a few time...even when I didn't know why I was sick. My staff asked me when I was going to quit work as I was working ill most every day. I told them that when my doctors told me I was sick I would quit.

I quit in June 2003 and got diagnosed with Sjogrens in September 2003. Skin disease diagnosed 2002, Sjogrens 2003 and the other 2 in 2006 and the deafness (autoimmune disease) in 2016.

After all these years I have not figured out what it really means to be sick enough for autoimmune disease to affect daily life. It has affected my life since 1964 and was miserable.  Autoimmune is a disease of wane and ebb. We think we can't go on any longer and then we perk up. The bottom line is we Sjoggies are tough and we keep going to doctors to get help and hope for the best. Rest when we need to. Work inside the home or outside the home when able and just keep plugging along. A good nap can make a world of difference and give us enough zip(lol) to get supper and the dishes done. Sometimes we take to our bed for a few days and then perk up.

To say that it sometimes goes away would probably be a lie, but it goes away long enough to get some things done. Make sure to have a good primary doctor. If you don't.. find one. It takes a lot of energy to be sick and shop for doctors & we get burnt out. I will add that it can be stressful at times on a marriage. My hubby developed a different outlook on life when he became chronically ill. That really leveled the playing field so to speak. He was sick of taking me to doctors at one point and I said fine I will go alone cause I want to know what they are going to put on my death certificate as cause of death.

A hot water bottle and a blanket were my best friend for much of my life and I have the heating pad now. I had a whole lot more issues than I complained about here but a person loses track after 50 years. Find a good ENT and doctors who will treat the symptoms and your life will be better....not always good or great, but better. And be eternally thankful for every day you get through. From the lips of an old woman. Good luck. meirish

[meirish]

My previous post is really long but I had to cut it down to get it to print. So, it is really short sentences and to then post. Doesn't sound very friendly so sorry. I couldn't find a way to do it other than to take out a whole lot of words. People know I am long winded. meirish

[Cindy]

Thank you for commenting back. I had faith that my progress was going to be slow progress disease. I have an app with my rheumatologist on the 23rd of this month. I take LDN and a lot of supplements. Will see what she has to say about my progression. This has me extremely sad and overwhelmed.

[meirish]

Hopefully you will get some good input from the doctor. Just know that not all of my issues were caused by Sjogrens. Know that we can have other issues that can tag along with the autoimmune and make us blame autoimmune on everything. My other 4 autoimmune diseases had some part. It is hard to sort of symptoms when one has more than one autoimmune disease.

Try not too get too stressed out and aim for optimism as this is half the battle. If we let ourselves get too upset and discouraged this affects our condition and can increase our symptoms. Stress is known to really aggravate autoimmune issues. In spite of all my issues I worked until I was 60. It was hard a lot of the time, but I don't regret it at all. Work and being with others tends to help us endure. We learn to put our attention on our work and it also ups our adrenal rush which does make us feel better.

The good thing about autoimmune diseases is that generally the issues we have will not stay at the same level of pain, discomfort, etc all the time. It wanes and ebbs. Many diseases are not like this and it helps us to have some better days and sometimes some really good days. A person can learn to cope with discomfort and general yukkiness. I have a son with very bad Hashimotos and he and I call it yukkiness cause we tend to feel like we are walking around with the flu much of the time. A person can learn to forge ahead and keep going. It is better than sitting home and feeling sorry for ourselves as that makes for a whole lot of empty days to look forward to.

Know that most of us struggle and understand how you feel, but with the help of doctors there is always hope. Have you tried Plaquenil? This is also called Hydrochloroquin and is actually an anti parasitic drug used for malaria. Back in the 1940's-50's people with malaria would be put on this drug and find that their rheumatoid arthritis or lupus symptoms were much less. It is one of the primary drugs to be given for Sjogrens. It helps with pain and other issues, It helps everyone is a different way and does make life better. Some people say that it does help with some of the dryness. If I had to stop taking it for a few weeks I would start having an increase in symptoms so that prove that it was helping me.

Now you will hear that many doctors and people will say that it will make you lose your sight. That is not really true. The thing is that the dose for malaria is much higher and that dose will cause some people to have eye issues. People on the lower dose Sjogrens need is seldom the cause of any eye issues. My DIL is an optometrist and this drug has been studied and used by many eye doctors who have never seen the eye problems. However, it is necessary to have ones eyes checked every 6 to 12 months yearly to make sure things are ok. I took the drug for 14 years with yearly exams and had no problems. My DIL also said that there is another eye condition that has very similar symptoms as the eye issues caused by the Plaquenil and some eye doctors have mistakenly diagnosed the wrong disease. It is wise to see an ophthalmologist who has more training and understanding of the eye issues. I had to quit the Plaquenil and several other drugs due to my stage 3B kidney disease.

There are many new drugs on the market for autoimmune diseases and chances are it is time for you to pursue this option. We have to actively pursue treatment to keep ourselves comfortable....just part of what a chronic health condition needs. Take care and let us know how the doctor works out. If you need to find another doctor just do it. Most of us on this site have had to pursue new doctors for months or years. When you find the right one it will have been worth the struggle. meirish

[Nomad]

Cindy..I totally "get it." I am more than a little freaked out. My dry mouth is truly horrible and debilitating. I'm constantly making noises with my mouth. I'm embarrassed to be around people many days. I'm uncomfortable physically. And I e had some other health oddities lately out of the blue and I'm wondering if they are sjs related. We moved five years ago and I never got a rheumatologist in my new city. But I've finally located one and will see her early February. Good luck with your appt. Maybe report back? I will with mine.

[eye2dry]

Hi.
When I was 1st diagnosed in 2010..that was my main symptoms..dry eyes and mouth. Had those problems for several years used OTC to help myself. Here it is 2023, I no longer have dry eyes and mouth. It just went away. I have mostly knee, hip, feet and wrist pain from RA.
My Rheumatologist told me that sjogrens and RA symptoms was and wane, I find it to be true. I hope your terrible dryness leaves you as it did me.

[meirish]

It still could help to get yourself an Ear, Nose and Throat specialist and see if he has more info that could help. Often they know things that rheumatology doesn't. I have had 3 or 4 rheumies (I forget now) and non of them were worth keeping. I hope you have good luck with yours. meirish

[Kelley170]

I'm sorry that you have had such difficulty! 

When I was first diagnosed with SJS about 9 years ago, I had dry mouth and dry eye symptoms for 5+ yrs before. Yet I did not call it that- to me it was extreme thirst and eye pain with blurriness, along with frequent eye infections. Then when I was diagnosed it made sense! I never would have guessed that I had SJS since autoimmune didn't seem to run in my family.

My rheumatologist put me on Plaquenil (hydroxychloroquine) & Salagen (5mg, 3x/day) (pilocarpine ) which started helping after about 4 months. The meds are a life saver for me.  I had been using every OTC dry mouth & eye remedy (expensive!) but they didn't really help. The Salagen makes a night and day difference for me. It also helps prevent me from getting cavities, which I had a problem with prior to diagnosis.

My ophthalmologist put me on Restasis eye drops which also make a huge difference! If I miss one night, then my eyes get worse, blurry and crusty.

I do find that the symptoms still come and go when I have a flare, which usually happens when I get sick. When I heal from the illness then my dry eyes and mouth start getting better again.

I always write down my symptoms and questions on a notecard to refer to when at my rheum appt, otherwise I forget what I need to say!

There are other dr mouth and dry eye meds that are available that might work better for you. Also there is a new and better medication for dry eyes that my ophthalmologist gave me, but I can't tolerate it. (I forgot the name of the new med!).

All best!