Five weeks ago Sjogren's wasn't even a thought. Then two nights in a row, I woke up parched, eyes dry and painful, throat closed. I have RA, so I spent two sleepless nights worrying it might be SS. Then I went back to normal -- for a week. Then a cascade of symptoms descended and stayed: dry mouth, tongue, and throat; dry eyes, glands in neck that would swell and ache, then abate, stomach upset, headaches.... The blood tests were negative, the RA is controlled and very quiet. My rheumatologist was skeptical, saying it doesn't come on that fast; a Sjogren's dentist felt it was likely. I've been on Plaquenil for years, also low doses of prednisone and Restasis (to prolong contact lense comfort). I asked my rheumatologist if these drugs had possibly masked the onset and he said no, it doesn't work that way.
So here are my questions. Has anyone else had a similar onset? From 100% normal in week one to pretty convinced it's Sjogren's by week 3?
When I google my symptoms, dry mouth is attributed to SS or to a variety of drugs, none of which I'm on. (There's also been nothing new introduced to my diet or lifestyle; in fact, onset was while I was on vacation 3000 miles from home, and the cascade of symptoms came at home.) Does anyone think it might be something else?
I would appreciate all thoughts and opinions!!
I do not feel that I can respond to rapid onset but here is my normal Sjogren's welcome.
While I am glad that you found us, I do not like it than anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.
Sjogren's – Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.
You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.
I like also suggest that people with AI diseases read "Spoon Theory" on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
1. Don't Panic – Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book "Feeling Good" by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.
2. Breathe – For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.
3. Meditate – Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think "I am" as you breathe out, think "calm". Repeat as needed. Meditation can be as good as sleep.
With Sjogren's we tend to have a lot of infections so wear your "polar fleece mumps scarf" to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.
Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.
I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
Sip-Swish-Swallow are the three S's of Sjogrens.
Well, you mentioned you just got back from traveling. The traveling itself could have set off a flare. It sounds like you are in a flare, and in time, it will subside if that is what it is you're going through.
Adrenaline could have kept you maintained through your trip. Now that you're back and the surge is passed, SJS was allowed to "wake up".
Rest, try not to stress or breakdown mentally. I did that last time and recovery from my last flare still lingers so it does, in my case, prolong the agony when we stress about it as it is happening.
So, the question, "Is onset of symptoms acute", it can be if what you're suffering from is a flare. So some people start with mild symptoms and then start getting flares, and some people may have such mild symptoms that are not really noticable, then have a flare - which may be what has happened to you.
Regardless, you are in "dealing" mode and need to rest and relax, then work yourself into "healing" mode, which also, rest and relax.
Take care, Java. I hope you get relief soon.
Yes, yes, yes, we had major rapid on set!!! Although most with Sjogren's seems to come by the diagnosis after prolonged periods of "illness" and often have it wrapped with a variety of others, we are proof that it can come slamming into you. No history of anything, not even the usual candidate...perfectly healthy, never really sick at all, highly athletic and to top it off a 16 year old boy!
My teenage son was fine Friday when I sent him off for a school event, they called Saturday saying his mouth hurt, Monday morning we went to Dentist for "best guess" TMJ stress, and low and behold 8 hours later BAM!!! his eyes looked as if they had filled with blood, he had a 103 fever, jaw had swelled shut (didn't know it was mass is parotid gland at time), couldn't move his neck or back, couldn't take light or sound. The hospital didn't want him and neither did his Dr.
Pediatrician referred to ENT, each suspected random virus. ENT was great she believed me when I kept saying this just isn't normal, did 5 sets of blood tests for everything under the sun- or so we thought and couldn't find anything. Sent me to Rheumy who she felt is best diagnostician in the area and he diagnosed it in one additional blood test. Abnormal ANA, Positive A/Ro and B/La, written clear as day by the computer across his lab work what it was - Sjogren's.
Crashes keep coming....since he started mostly with the joints, and didn't express that he thought his mouth and eyes were dry, we were sent off with Naproxen for the joints. Then this last week within 24 hours both his eyes and his mouth dried up. He actually had to call from Band Camp and said, "Mom, I think my eyes dried up, I can't blink." His mouth followed 24 hours later. I was able to take him medicine. I just picked him up yesterday, he asked me to put the gel in his eyes last night, because it felt too weird to do it himself, I asked him how he did it at camp, he said he asked his roommate to help him!
We're going back to the Rheumy on Monday because the symptoms keep coming. As a newbie to this disease, I have said it seems like I am back studying for a college final with the amount of cramming I have been doing the last couple weeks. I can say that when I talked to his Dr. on Wednesday about his eyes drying up so quickly he was very concerned about the rapid progression. Someone called from his office both Thursday and Friday to see how he was doing.
Go back, tell your Dr. it can come on this quickly. All this started May 5th with a call about a sore mouth...my MVP sports son is now arthritic, exhausted and dried up. Welcome to Sjogren's
Your description of rapid onset was almost identical to mine. I went from normal to a very sick person overnight. That was almost 6 years ago and I have improved with treatment and time.
Anna
Hi, Java. Sorry you needed to find us. One thing you need to do now is stop wearing the contact lenses until you get to an ophthalmologist. Not optometrist. I'm guessing that you will be told to stop wearing them entirely. (I know, I know. I cried.... I had a toe amputated the same time. No tears for that!) But you can get corneal abrasions, and lose your vision.
Autoimmune diseases like to bring along company. I'm so glad your RA is in such good control.
Welcome, and remember -- there is no such thing as a dumb question.
Sharon
Thank you to all who have answered so far (and to anyone who will). You've given me a lot to think about and some great advice.
I like the thought that this is a flare and I haven't practically overnight gone from healthy to having to constantly sip, suck, spray, etc., and that this discomfort may recede a bit. Does air travel often cause a flare? It's drying, I noticed the worsening even as we flew.
I don't know how you all (I guess WE all) do it. How limited is your computer/reading time? Can all that TLC -- no sugar, brushing/flossing after every meal, Rx-strength fluoride toothpaste, etc. -- help save our teeth? I'm already tired of sucking on mints and sugar free hard candies -- I guess I have no choice. And I guess it's all individual -- when/if someone loses sense of smell and taste, loses the ability to swallow, etc. Right now one of the few times my tongue isn't painful is when I *am* eating. I read a blog that mention choking a lot. Is that a problem?
Dr. Faustman's research looks promising - but too many years away. I looked for similar work being done, but outside of different drugs didn't see much. Is there anything of promise that I might be missing? Further stem cell research?
I know I'm all over the place, but I thought it would be better to throw out some of most pressing questions, and there are many. BTW, I did discontinue contacts, although I stayed on the Restasis.
Any advice or comments are welcome! And thank you again.
Have you thought of trying Evoxac? It stimulates saliva and has been a lifesaver for me. It will also help to save your teeth by keeping more saliva around your teeth. All the other stuff is so temporary.
Take care.
Anna
I have a filled prescription but was warned to wait until I have a clear day, due to side effects. Along with SS and RA I also have pretty bad ibs (the auto-imminue party pack). So was warned to proceed very cautiously. Did you experience many side effects and did your body adjust with time? And does the drug still offer relief?
Hi, Yes rapid onset happened to me, quite literally overnight. Negative for SS-A and SS-B. 1:1280 ANA. Family history of severe autoimmune.
For decades I had low level depression that was easily treated with meds. When Sjogrens hit, that escalated into major depression and anxiety for several months with insomnia. It was a time of grieving and mourning, searching for ways to cope, and many MD visits.
There have been others on this forum who have also attested to rapid onset.
Yep, literally 2 days it hit me. I thought I had a bad virus so rested & tried to work then crashed hard into a major flare. I was dead set against plaquenil but it has given me 85% of my life back... I'll take it!
Good luck & don't forget about other common autoimmune diseases that like to hang out with Sjogrens. I have many that were diagnosed before & after Sjogrens.
Blessings
Regarding side effects with Evoxac, I experienced heavy sweating. In time it does subside but it does take awhile. For me, the moisture in my mouth was so needed I put up with the side effects. I take one pill when I get up to go to the bathroom about 4 or 5 in the morning and go back to sleep. I take another before lunch and the last one a half hour before bed. You can work out your own schedule. Some people take 1/2 hour beforeeach meal. You can also take with some food in your stomach but you will not get as much saliva this way. The medicine works better on an empty stomach. You will just have to play around and see what works best.
Anna
18 mos of half flu feeling and random swollen nodes and then the first weekend in May I got overheated and by the next weekend i couldnt go up and down the stairs. joints all hurting so horrible, extreme fatigue , face swollen - so yeah, pretty dang rapid as far as the excruciating pain, i didnt work for two weeks.
Mine was not sudden. It started with fatigue and insomnia, then the dry skin...very dry skin. I then startedhaving achy, stiff joints and interment low grade fevers. I didn't even have the dry eyes, nose, mouth and more, and brain fog until a few yrs later.
Hey Joe S,
Can you tell me the amount of the 5 supplements you recommend?
The supplements come from my search for something to slow or reverse the affects of AI diseases. I have the belief that AI diseases are caused by Nano-bacteria. When you are given an anti-biotic some members of the colony or school have time to loose their outer shell. When the bacteria do this they become a nano-bacteria. I learned this from a biomed tech I know. ("Cell from heck", Popular Science Magazine article: http://sharonguynup.com/Sharon_Website/Articles_1_1_files/Pfiesteria-Pop%20Sci.PDF ).
These nano-bacteria use the mitochondria DNA of your cells to reproduce. It takes two nano-bacteria to to create and AI disease. They damage Gene 6 and 7 of the mitochondria. ("The Insanity Virus" Discover Magazine" http://discovermagazine.com/2010/jun/03-the-insanity-virus )
Acetyl L carnitine repairs damage to your Mitochondria DNA. R-lipoic Acid removes the debris from the repair. Co-Q10 helps to give your cells more energy. PQQ repairs the telemires to extend the life of your cells. When using Acetyl L carnitine you tend to loose biotin, so supplementation is required.
More information on the supplements can be found in Life Extension Magazine ( lef.org/ )
Yes, mine was rapid onset. Looking back, I can now see little symptoms over the years that I didn't put together. But it seems like true SjS slammed me the day after returning from a week's vacation in Florida. I laid down to take a nap and noticed that my mouth felt prickly. Within a hour, my lips and mouth were on fire. I thought it was an allergic reaction to something and went to several doctors. Finally, an ENT diagnosised SjS thru a blood test.
SjS sucks...
Dee