Age at diagnosis? And how long you've had symptoms?

[LilliaT]

I saw a new rheumatologist a few weeks ago, who was much more thorough in her testing than the prior one.  Still no definitive diagnosis, although she suggested I consider trying plaquenil for a few months, just to see if I notice a difference.  I expressed concern about the retinal toxicity issue, and she assured me that plaquenil is a "very mild medication" and that retinal issues are extremely rare.  (I mentioned the more recent studies showing that retinal toxicity is much more common than previously thought, and that the damage may progress even after the medication is stopped.  But she said that she'd seen issues "only in people who've been taking it for many, many years.")

I am in my early 40s.  A while back I saw that another poster had suggested that, in the past, people were diagnosed later in life, and thus would not be expected to be on plaquenil for decades -- but that people are getting diagnosed at younger ages these days.  If I were to start plaquenil now, I could conceivably be on it for decades.  If I'm recalling correctly, the studies suggest that the risk of retinal damage may be as high as 20% after 20 years (and that there may be sort of a lifetime dosage threshold -- where damage is basically inevitable after a certain point). 

So this started me wondering at what age people here were first diagnosed and first treated (with plaquenil or something else).  And, if it's not too personal of me to ask, how long it has been since their diagnosis.  I'd also be curious to find out how long people noticed symptoms before diagnosis.  I know everyone's experience with Sjogren's is different, but I'm just trying to get a sense of other people's experiences.  I'm sort of flailing about as I try to figure out what to do.  It's hard to make a decision when I see and hear so much conflicting information about the risks/benefits of different treatments. 

If plaquenil will slow down the progression of the illness, or possibly prevent further damage, then I suppose it is worth it.  I want so much to stay healthy(ish) for as long as possible, and to continue to be an active, engaged parent to my 10-year-old daughter.  But the retinal issues are really scary to me.  So I guess I'm just hoping to find out what other people have done, how long other people have been on plaquenil (or other treatments), and whether they'd do anything differently.  Thank you.

[Judie P]

I have never been on Plaquenil, so I cannot answer that question.  I was diagnosed two years ago for Primary SJS by a nurse practitioner.  My SS-A was very positive and my ANA was positive.  Before my nurse practitioner came along, I did not have an answer for eight years.  I was told that everything was in my head.  I was 64 years old, so I probably started in my 50s.

The only medication I have been on is Effexor for the depression and anxiety of SJS and for fibromyalgia pain.  I will begin taking an inhaler for asthma next week.

I did, however, have a very strange reaction to eye drops when my eye doctor put them in to check on the progress of my cataracts.  I had to go to ER because my blood pressure was up to 200/150.  I was run through treadmill tests, etc., and passed them all.  By the time the eye drops had dissipated, my blood pressure was back to normal.

[trejonina]

Hi, my morning malaise and fatigue started since 15 yrs. Now it's gotten way worse.

[Navigator]

I noticed symptoms for about 3 years but didn?t put two and two together. It took a major flare with horrible pain to get me diagnosed.  Been taking plaquenil for 10 years now.   No problems with it.  And have not had a significant flare since the first one...do cycle through fatigue flares but not the muscle pain and neuropathy symptoms like before.   I have an excellent eye doctor.

[irish]

I started having symptoms back in 1964 that progressed and changed from one ailment to another. Doctored a lot and treated like a hypochondriac and worse. Really started down hill in 1996 and got diaqgnosed with Bullous Pemphigoid (skin) in 2002, Sjogrens Syndrome in 2003 and Myasthenia gravis, Hashimotos and severe t-cell deficiency in 2006. Then this year diagnosed with autoimmune ear disease. Lost hearing in right ear in 1996 and have lost about 1/2 of left ear hearing now. Two blood tests show 2 different antibodies trying to kill off my hearing.

I have been on IVIG once a month 80 grams (big dose) for 10 years, prednisone for 10 years in varying dosages. Tried Methotrexate, cellcept, Imuran and hard to tell if they helped. Also some steroid pulse therapy. I am a hard to treat as I have allergies and react to some of the meds. Just keep on keeping on. I am 74 soon so it has been a lifelong battle. Irish

[eye2dry]

hello.

I had symptoms back in my 30's, f fatigue....leg weakness
with not being able t pick up my foot/feet completely while
walking and tripping. Diagnosis thrwn around was anxiety or
MS.....symptoms came and went and finally went away.

Early 40's eye problems such as burning, itching, redness.
Had to eventually give up my contact lenses.
Diagnosis was allergies...then ocular rosacea.

Late 40's eyes very dry, developed very dry mouth.
Started carrying bottled water with me at all times.

Age 52 dry red eyes....dry mouth...extreme fatigue...joint pain
swelled fingers.
Labs done and showed RA and sjogrens and hypothyroid
Started on Plaquenil and prednisone
later Plaquenil with methotrexate
now Plaquenil and Cymbalta and synthroid

age 57 (2015)..applied and was approved for disability


shelly

[jazzlover]

I've been ill for 30-40 yrs .. but the SJS did not really show itself until about 10-12 yrs ago. I was diagnosed at age 57.

I am not on any drugs for SJS because I react to just about everything out there.

[Maria3667]

I was diagnosed at age 35, but symptoms started about 5 years earlier after being infected with Lyme's (for which I was treated). I'm still confused as to whether I have reminiscent Lyme's or Sjogren's. Lyme's is difficult to test for because of false readings and there's not 1 conclusive test yet...

[Dawnmist]

I got ill with glandular fever at 15, and never really recovered. Was left with poor sleep quality, muscle stiffness & pain, lots of fatigue, and a high tendency to developing tendinitis. At 23 I added neck joint issues causing regular migraines, and sensory oddities in the skin of my legs when really tired at the end of the day - but sleep would fix those.

At 37, I went to my GP and said that I couldn't keep living with the pain I was in. That was when he finally decided he maybe should do a blood test to "rule out" anything like arthritis or lupus being behind what was happening. The blood test - and two others following it - screamed Sjogren's, so I was sent to a Rheumy who confirmed the diagnosis when I was 38.

I turned 40 last week.  I've been on Celebrex for inflammation for about 20 months, and Plaquenil for about 18 months. The "sensory oddities" have progressed into Small Fibre Neuropathy that affects my legs from toes to groin, arms from fingertips to elbows, and starting to affect my back from the base of the ribs to the top of my shoulders. I'm on a combination of Lyrica, Tramadol and Duloxetine (Cymbalta), and use Lidocaine patches on both palms and the sole/heel of both feet. That manages to keep the base-load of burning/stinging under control, but my skin reacts to pressure badly which has meant that if I still want to work I need to use a wheelchair to get there - the evoked pain as a result of walking to the bus stop/train platform/from the bus stop to work leaves me unfit to work by the time I get there. 300m walk produces migraine-severity pain that then hangs around for 3-6 hours.  I also have issues with holding things in my hands, and haven't been able to use a computer mouse for more than a year. That means that I cannot use a manual wheelchair, so I had to get an electric wheelchair instead.

Being in Australia, I have no access to IVIG - its use here is restricted to treating conditions that can become life threatening if not treated. My Rheumy tried to get me access to Rituximab, but that got blocked by another Rheumy who decided that there was no objective proof that there was anything happening to my nerves and therefore there was nothing to treat and no reason to try anything as risky as immune suppression. So at this stage, I am still not being treated with anything to slow/limit the nerve damage that Sjogren's has been causing.

[cccourt1942]

Lillia,
     I like reading replies to queries like this.  It stokes my memory.  But for a second "mumps" occurrence at 22, there are other explanations for all those other events in my life.  For that matter, the 2nd mumps I was told it was not a freakish occurrence to have mumps more than once.  At 74.. never met anyone else who has had mumps twice.

      I had hard time in late 20's early 30s w' periods.  Partial hysterectomy @34.  (left ovaries)  Biopsies explained all conditions. 
      By perimenopause I had the severe joint pain/body aches.  I also had severe neck/shoulder chronic pain. Suffered stiffness in early 40s which landed me in a pain clinic..amounted to NSAID treatment/physical therapy for months.   Only reason I allowed myself to be mired into the Houston medical center was neck stiffness.  Could barely drive as I couldn't move neck to see right or left without pain.  I was diagnosed with chronic muscle spasms.
      Next followed by full menopause--fatigue...and migraines (common occurrence...disappear after menopause).  So get to ceasing post menopausal hormones..and fatigue is worse. 
      Back to earlier: by 45ish (that perimenopausal time) my eyes started.  By this time I was in W. Texas...dust, tumbleweeds, winds...well...West TX weather.  Eye doctor recommended an OTC (individual) eye drop.  Used that for over 25 years.  Still use it in fact.  As to dry mouth, my work always called water consumption.  I can't say which came first.  I think the profession.  I retired but kept working part time.  Water consumption, fatigue, horrid eye problems present.  I was in early 60s.  Started having sialadenitis--salivary gland infections.  SEVEREST pain.  My eyes would be dxed as "allergic  conjunctivitis, and treated w' steroid drops.  Well...neither ENT nor ophthal mentioned SjS...but neither knew of the other dx.  By this time (about the last 5 years I worked) I worked and went home...curled up..and rested, slept.  I did continue a modicum of exercise..which decreased primarily because of dry mouth.  I'd have to drink water continuously...then have to stop and pee..and I did this before I would start to work 3 or 4 days a week. 
      By age 71 (as someone else has noted) my GP's PA put it together...and advised me to get blood work done.  And I did...and the rheumy who did it didn't believe I had SjS as I was "too old".  btw: that is the rheumy whose initial advice to me was "stay off the internet".  Ha, ha.  I just wish he and other rheumies would peruse this forum every once in awhile.  Needless to say, I had SjS...and an apology from the doctor. 
      To your major concern:  Plaquenil (or hydrochloroquine) is the drug taken by most of us.  It was NOT Rxed by my diagnosing rheumy.  His stand was there were no studies which could verify the drug stopped progression of the disease.  These have been discussed on this board.  Most of us agree the problem w' the studies is the number of subjects (S) in the studies.  Too few.  On this board there are a few who have had negative reactions to it, but very few.  There are others who choose not to take it for one reason or another. 
       That being said, if your fear of long term usage will cause you unnecessary concerns, it would not be beneficial to you.  Talk to your ophthalmologist.  The first YEAR I was on it two things happened:  1) my rheumatologist checked notes from my ophthalmologist re my retina every three months and 2) (ha, ha...this one has to follow #one) the ophthalmologist saw me each three months.  btw: I continued on the ophthal's 3 month schedule for another 6 months.  The rheumy now checks each 6 months.  So even at my age, there is much attention paid to the possibility. 
        Personally, I accepted the drug and risks due to my age.  I may be the one to whom you referred commenting on starting at an advanced age.  I must say, I would not like to risk my vision should I live a REALLY old age.  I don't have glaucoma, I have not had cataract surgeries..and my ophthal says I am about 2 or 3 years away from needing it in one eye.  My older brother had cataract surgery for both eyes in his late 60s.  So I guess that is a good sign. 
         I was treated by the various specialists for my various complaints before dx.  I was accustomed to this format.  I transitioned well w' SjS dx and continuing to see the varied specialists.  Once I had my medical team in place, I had to learn to trust..and trust implicitly.  I moved about 9 months after my dx.  I ran into some strange MDs while eventually finding the ones I use now.  I believe this is key..and see many members here say this.  If you are uncomfortable, move on. 
         You will find much comfort here...and wisdom.  There are varying outlooks and choices for treatment found here.  All mean well.  But?  You will learn about options...or information to consider...or ignore!  Your choice. 

    Best to you in your journey. 
Sjoldier c3

[Liz D.]

My symptoms started when I was about 36 and got diagnosed at 40.  I've been on Plaquenil now for 12 years that I started when I was 41.  I get a special intense test every year ( forget what it is called) to check for toxicity and so far, so good. 

I have some concerns about the length I've been on it, but the thought of not being on Plaquenil scares me.  It has really helped with inflammation and fatigue.  Sometimes I feel like I want to wean off of it and see what happens but then I get scared it will lead to a bad flare and I'll need steroids which scares me more.  So I'll stay on Plaquenil until eye doctor says I have to get off.

Liz D.

[Emics]

Hello. As I have posted recently, I am 40 and I have been recently diagnosed because sadly I lost a baby (5 months, anti Ro damages the electrical conduction system of the fetal heart in some women). Looking back, I started with symptons when I was 34 (dry eyes, corneal ulcers, mumps), but the doctors I visited considered that symptons could not be Sjogren...
In this last year my sicca symptons related to my right eye are getting worse.

So I am still being studied and shocked.

I have recently started on Plaquenil (200 mgr per day, which it will be 400 mgr), with no adverse effects so far.

Unlike most people here, I do not feel fatigue, joint pain or stiffness so far. (although I am starting to wonder if those days I am tired it is because of my job or Sjogren... I don't know!).

[Wal]

I'm 37. Symptoms started this year in January. No diagnosis. My sensory disturbances started at age 28. Those sensory issues have come and gone since. Perhaps it started then. I'm not on any meds for SS, just natural stuff as my symptoms are milder than many here.

[paulc182]

I'm 24 now. No officially diagnose and seronegative.
Prior to August was a perfectly healthy male. I started getting neuropathy and coulda sworn I had MS or something. Started on B12, was fine for a bit...then I started getting all this weird shoot like gut problems, dizziness, dry mouth, breathing problems. The latter two stayed and in November I developed dry eyes and these weird erratic nerve aches on my joints this month, dry sinus and some more neuropathy this month. IDK if I can attribute it all to Sjogrens. If yes, then I have a CRAZY fast progression compared to everyone else here. Could be a vitamin deficiency or some fibro, or another autoimmune, either way my luck has been crap since then. Taking some supplements right now and not on any medication yet. I'll see how long I last before this becomes debilitating for me.