Hi all,
I was wondering if others had a similar experience as I had. I am 32 years old and was in great health (I ran half-marathons and was eating well). I didn't notice any of the symptoms of Sjogren's. In mid-July I was prescribed an antibiotic, Flagyl, for BV (which isn't really an infection, just an imbalance of the normal "flora"). I took one pill and started experiencing severe stomach cramping and lost all my appetite. I went to the doctor and they took me off of it, because I was reacting so badly. A day later my mouth and throat dried up and I thought I was having some sort of allergic reaction to the med. The doctor thought is was reaction to the med and said it should subside in a few days. The dry mouth and throat continued and then I started having all kinds of other symptoms, which I know now was Sjogren's, like weakness and fatigue. At one point I was treated for dehydration, because that's what they thought was going on. Finally, one of the doctors did a test for Sjogren's, because of my dry mouth, stomach problems, and weakness. I also started experiencing dry eyes, nose, and skin all of a sudden. I have even had neuropathy off and on. I ended up missing a lot of work, because of feeling awful. I have never experienced any of these symptoms before. My ANA panel came back and I was positive for both SSa and SSb. I did see a rheumatologist last week, and he told me it's rare to have it come on all of a sudden and is also rare to be positive on both SSa and SSb tests. If anyone has a similar story, I'd be interested to hear it and what the course of your illness is, not that it will necessarily tell me the course of mine, I realize. I just feel knocked over by this thing!
Jajo,
My onset was rapid. I've had stomach problems for a year and had been having some headaches. However, I was at the gym every day. I'd volunteer in my son's class, I was babysitting, going to college full-time, keeping a clean home, and functioning quite well.
Then in April, I felt like I was getting a bug, and I was in bed for a few weeks... Then one day i was feeling a little better, went to the mall and had some major neurological things happen (long story)- anyway, went to the PCP, he ordered blood work, showed positive ANA, he told me he thought I had lupus.
Now, here I am 4 months later and I have just one of the antibodies but also anitphospholipid, and arthritis, all out of the blue. I am better than I have been but I am not anywhere near where I was. I can barely do a load of laundry. Making scrambled eggs leaves my arms screaming. Just getting my boys to and from school proves to be all I can do on some days.
I'm not in exactly the same boat but I really didn't expect this to be what was wrong, I thought thyroid or blood sugar. Not auto-immune problems.
I'm 28 (on the younger end for sjogren's too). Now looking back, I'm wondering if I haven't had small "flare ups" over the last few years but nothing like what I've been experiencing.
Jajo, welcome to the forum. You will find a lot of good information here.
As to the sudden onset, I can not say much. I think it may depend on what you believe is the cause of Sjogren's.
I disagree with your doctor about sudden onset and surprised he doesn't know. It is quite common for autoimmune disease to lay dormant until something (infection, trauma, etc) sets the disease into motion.
I may have had some slight symptoms in my early years, but nothing bothersome. I too was very active (off road biking the week before I got sick) until 1996 when I got an upper respiratory infection. All heck broke loose and I was inundated with neuro, dryness, and cardiac symptoms. It's now 2011 and I have been disabled since 1996. My story (the very short version) is like many others, where something sets the wheels in motion.
BTW, welcome to Sjogren's World.
Hi jajo,
Please let me Welcome to Sjogren's World! ;)
You've come to the right place for information, encouragement and some friendly people. I hope you'll find the site and forum just as helpful as it has been to me and many others.
Your story certainly does seem like a very sudden onset of symptoms. You should hear from others, like Danielle, who had things come on suddenly, too. And then there are those of us who had symptoms for years but no one could put it all together. For me, some symptoms came on suddenly, and then after a bad bought with a cold/sinus infection all the eye, mouth, extreme fatigue and joint pain began.
You are exactly right that no one's course of illness is the same. Some have only mild problems, and stay that way. Some have a few more, come and go and get progressively worse, or get better. A few do have very serious issues.
I can tell you there are treatments and lifestyle changes to let you live your best life. It can be tough to be handed a diagnosis, but coming here will be of great help. We are here with you, and you are not alone.
Please keep posting. We look forward to hearing more from you. :)
Melinda
I would just like to point out that antibodies take time to develop, so it may be more accurate to say your symptoms came on very suddenly, not the disease itself. In order for the antibodies to build up, your immune system must have been in "attack mode" for at least a little while, probably the trauma of the Bacterial Vaginosis and antibiotic treatment triggered a flare which made the symptoms noticeable.
I agree that it can seem to come on sudden. We all understand it is a heck of a lot to take in when you get positively diagnosed with something. There a a lot of "small symptoms" with SJS that we really just ignore or attribute it to something else. Tiredness, aches & pains, dryness, rashes, etc we just blame it on something else until 1) it doesn't go away 2)it gets so bad you see the dr or 3) dr sends you to a specialist.
I was 3) as acc: to my gp my bloodwork was way out of wack and 5-7 sinus/throat infections per year was not normal. After I did finally get diagnosed with Sjogrens, I started thinking about the other stuff/illnesses I had in the past and it kinda added up. Like 5 teeth cavities my whole life up until 10 yrs ago and then 3 cavities per year - dentist thought I didn't brush/floss, etc..
As to the rarity of having ANA, SS-A and SS-B all high. ::) I don't think so. My ANA is so high they quit counting and I have very high SS-A & SS-B. Sjogrens affects everyone differently as I don't have the bad symptoms a lot on this board have and hold down a full time (& overtime) job. I have a bunch of stuff they are watching/monitoring and so far have stayed close to abnormally normal for me. I learned to feel my fatigue coming on, so I can usually avert "hitting the wall" with it. I did have a couple weeks I ignored it and had to take 2 days off cause I was so durn tired and slept most of those days and nights.
I go to a research/teaching hospital and it was an immunologist who diagnosed me. Frankly I don't get much out of seeing my rheumogologist at all. I get more from my immunologist. I would recommend a research/teaching hospital for your specialists if you have one available that works for you travel wise. I got a run around for 6 yrs w/individual specialists.
Welcome to the group. We are all a bunch of nice folks who understand the frustrations, stress, etc associated with this disease. We do perservere.
The Flagyl rings bells for me. I suspect I have had SJS since my teens, but when I was 48 I got an infection after my total abdominal hysterectomy. The first dose of Flagyl caused all my joints to swell up, and I felt really unwell. Although the Flagyl was replaced with something else, my health has never been the same since.
Now, as someone else has already said, the auto-immune conditions can be triggered by trauma, and the hysterectomy was an emergency one, and was certainly traumatic, so maybe that caused lthe SJS to reveal itself.
Interestingly, our youngest son was given Flagyl for a dental abscess. It was around the same time he was also being treated with Roaccutane for his severe acne. He was 16, and his health nose-dived from that point. I suspect he may develop SJS, but at the moment he is diagnosed with Fibromyalgia and Raynauds.
I know that Flagyl is a very effective drug, but it scares the life out of me now.
Kathyx
My symptoms seem to be getting worse quickly too. :( Like others have said, I suspect I've had SS for a long time, but wasn't bothered enough by symptoms to ever think anything was actually wrong, but in the past few months, not only has my dry mouth gotten worse, but recently my eyes have gotten drier and have started burning. My joint pain has gotten worse, and my fatigue is just overwhelming at times. I hope the Plaquenil starts to help with at least the joint pain and fatigue soon.
Best of luck to you,
Sharyn
You need to research Lyme disease. Flagyl is one of the meds used to treat the cyst form of the spirochetes. What happened to you may have been a Jarisch-Herxheimer reaction. Do not rest until you are evaluated by a specialist dealing with Lyme disease. Other drs are likely to run tests at labs which will not find it....unless you are lucky.
a good lab for testing is www.Igenex.com .. I would suggest test #188 and 189.
PS Lyme can cause auto-immune problems. It did that to me. Lyme can lie dormant for years, only to surface when the body is in a trauma of some sort. ( or if you take antibiotics used for Lyme .. not knowing you have it)
up
I took Flagyl for an intestinal infection and got diagnosed with Sjogrens later.
Mine flared up huge ... all of a sudden ... overnight in fact ... second day on an antibiotic for my lungs (chest cold turned pneumonia).
I had some symptoms prior to that for a year or two but they were not anything at all that made me go screaming to a doctor. I'm sure I had the sjogrens then, but it was so mild that it wasn't in need of attention (and I had never heard of it back then to even consider asking about it)
But then ... all of a sudden ... WHAM ... I got nailed. And life hasn't been the same since.
Oh ... and I was mistreated and misdiagnosed just like you .. they gave me horrid drugs with horrid side effects - treating me for 'thrush' which I didn't have. It was the worst experience of my life. Worse than when I had a kidney stone .. and you know THAT is heck.
My Sjogren's came on overnight basically. This happened to me last year at 24. I was running 5-10 miles everyday and was a full time student in law school in great health. I had been on a trip to Europe last summer and I came home and the next day I woke up and I couldn't get out of bed, everything hurt, I had terrible brain fog, the muscles in my neck and my upper back hurt so much I couldn't even move my head. At first I figured that I had picked up a nasty bug on the plane or on the cruise ship, but after a few weeks nothing had changed.
I was originally diagnosed with lyme disease, and given a course of antibiotics. I had such a severe adverse reaction to the antibiotics and they seemed to make everything a million times worse. After over a year and many different doctors I was diagnosed with Sjogren's.
The onset is still puzzling since it was so sudden, one day I was perfectly fine and the next I was terribly ill. My rheumatologist said that its possible that I did pick up a bug on my trip and that the reaction my immune system had to trying to fight the bug sort of triggered a flare of Sjogren's.
I also had some sudden onset of symptoms, and it can really come as a shock. As Linda points out, our disease was there already, it's a matter of how and when symptoms appear.
I look at it sort as if it's been there lurking, just waiting for a stressor of some kind to bring it to the forefront. I believe research is still finding things such as genes we are born with and how that plays a part, and other ways the disease is triggered.
My onset was quite rapid too. I'm 32 so among the younger of us here.
I was in an abusive relationship for 8 years. When I managed to get out of it, the fatigue and pain hit me like a truck. I used to be able to work as a sales clerk full time, and party a lot, and I was suddenly debilitated. I realized something was wrong when I was for a week of holiday in NY (I'm from Paris) and couldn't bear to walk outside for literally more than 10 minutes. It took 5 years to get diagnosed.
I'm now in a very happy relationship (I'm married in fact) and run my own business. Just so you know that it's not just bad. ;)
I was called in Nov. 2010 ... my Mom had been found on the floor for 2.5 days and was headed for othe ER barely making it. I immediately went into action mode and stayed with her, managed her care in and out of nursing, hospitals, etc etc....rebuilt her home for handicap, ran all her errands, met with doctors, had much to do with her med tx plan plus ran my home and family and worked full-time. I wasn't crashing then as I have tons of energy but...emotionally I was getting there. Finally in May I had her back on her feet, living at home and driving occasionally with the help of a caregiver. So, May and June I decided to concentrate on my home and did tons of planting, digging, planting trees....lots of heavy manual work and by the end of June I ended up in my internists office with swollen big toe joints and fingers that seems "full", mostly right hand fingers. I thought I had overdone the landscaping thing but realize I was out in 100 degree temps doing all this work (I've heard sun can get Sjogrens flaring). So, with the absolute stress of my Mom's journey and the physical work out in the heat of summer.....poof....got the call to say it was Sjogrens and not gouty arthritis or the beginnings of osteoarthritis which I think I could have handled. As send in these posts....my life has not bee the same since. I know I could be worse so I am thanking the Lord in hopes that I can keep things at a minimum so I can enjoy a few years of retirement after all the hard work I've done. This is my story of how things began however, I do remember having bouts with my right big toe joint 10 years ago....then after Ibuprofen, no problems for another 5 years and then now in both toe joints....this is why the doc thought I had gout! Does everyone with Sjogrens originally present with some kind of arthritis that could be mistaken for Osteo or do they immediately get the rheumatic type of arthritis? thanks for listening :)
I don't know that I have Sjogren's, but I have a similar experience. A few years ago, I had a root canal to a molar on my mandible. This root canal became re-infected. Not only did it become re-infected, but I believe the infection was spreading to my jaw. Very unpleasant. I was told I might be able to save the tooth (normally they pull it), which was important because I was 'young' (in my 30s). I was referred to a place who lost my application for several months and then took over a year to complete more than 7 sessions, during which time the infection kept resurfacing until the last session and I was able to apparently save my molar.
During that time, I was repeatedly on antibiotics for the first time in my life. When I first took them, I took them in conjunction with paracetamol + codeine pain relief (didn't work). My mouth became massively dehydrated. I started to suspect I had allergies to one or the other and the next day tried the paracetamol tablets in isolation and my mouth became the Sahara desert. I don't believe it has ever been more dry. But I was unable to replicate this reaction in the future with either the antibiotics or the codeine paracetamol tablets.
Just as my tooth issue is almost fixed, I started to develop eye issues at first I thought were conjunctivitus. I started to see rainbow and ringed halos around lights, which is a symptom of closed angle/pigmentary glaucoma. So I went into the opthamologist who failed to find any glaucoma (despite him telling me my depictions were of glaucoma halos) and instead diagnosed me with severe dry eyes. I started to also notice I was pretty dehydrated, I often couldn't sleep more than 2-4 hours straight even in winter, and that is when I found out about Sjogren's. I have been tested for it once but gather it was negative as my doctor didn't give me feedback.
Is it possible antibiotic use could cause Sjogren's? It is possible I've had these dry eyes issues for a long time and didn't pay it any mind, but it almost seems to have come spontaneously 2 years ago. I still get my rainbow halos every day and have for 2 years. I get two types: after sleep and when sleep deprived. Some (but not all) artificial tears work (poly tears and murine appear to be the best), they get rid of the waking halos and they don't return but they have a short term effect on the sleep deprivation halos which constantly return with smaller intervals until it becomes useless to put in any more artificial tears and I must sleep because my eyes become no good for anything. My halos come about often during the day and are viewable in well lit up rooms, which kind of contradicts both closed angle glaucoma and dry eyes where pupil dilation is regarded as a factor in seeing halos. My pupils are often extremely contracted when I experience the halos.
Dear Gooey,
Why don't you repost this as an original thread. You have posted this as a reply to a thread that started in 2011.
Most people won't find your post.
Hugs, Elaine
I think that I probably had some autoimmune issues lurking in the later teens. I had a TBI my senior year in nurses training and never felt the same. I became so weak and had brain fog--though I didn't know what it was at the time. My grades went down and I rally had to struggle to finish the last 7 months of training. Thankfully my grades stayed good enough but not like they had been earlier.
I had all I could do to walk to classes and meals (I did 3 miles a day just getting back and forth to the dorm, cafeteria and classes not counting the hours I spent working on the floor. After I finished training I expected that I would snap out of it. Why I thought this I do not know.lol Youthful ignorance. Nobody knew how I was feeling cause I was so traumatized by it I could hardly talk to anyone. I got married the same year and as time went on I would tell hubby that "ever since my head injury I haven't felt the same" I always felt like there was something really wrong. Many trips to the doctor and many strange illnesses that sere hard to nail down.
Asthma, lumpy breasts that would swell and hurt, my voice got lower, back pain, arthritis of feet and hands, tendonitis. severe fatigue, GERD, countless infections, trigonitis of bladder, felt like I was going to quit breathing, lots of heaviness in my chest, generalized weakness and so on. Spent a fortune at the doctor. Head injury in 1964 and diagnosed with Bullous Penphigoid in 2002 after about 5 years of off and on skin lesions. No other doctor ever thought that because I had one autoimmune disease I maybe had another. Finally diagnosed with Sjogrens in 2003, saw immunologist 2006 and diagnosed Myasthenia gravis, Hashimotos( had hypothyroid since 1989) and 2 immune deficiencies and in 2016 diagnosed with autoimmune ear disease. I can say with certainty that the fall on my head triggered all this junk.
The thing is, I looked back through fancily history and had quite a few relative with thyroid, colon problems with surgery, weakness, many allergies to medications, poor ability to fight off infection. Immunologist says it runs in my family and and probably triggered by the head injury. I wrote an 8 page letter to one clinic and chewed them out as they told me I did not have myasthenia gravis or Sjogrens and I have a long list of doctors that I would have a talk with if I ever saw them on the street. So, life can be a pain or so they say. Not much we can do to change this but would be nice to have more to help us feel better. Irish