Am I the youngest person here with Sjogren's ??????

[momomom]

I'm 29 and I was diagnosed a year ago.  I had symptoms for about 10 years prior to that, but I waited until I had insurance to pursue a diagnosis.  I think the disease progression is unique for each person, so it's hard to say how we will feel in 10 or 20 years.  I know I definitely feel better since I started my treatment, so I just need to be hopeful that things won't get worse.

Cool, we are the same age. How long have you been on treatment? What do you take? I don't feel better yet from my meds but it has only been 3 weeks. I am so impatient and I am tired of feeling/looking like crap. How long did it take for you to start feeling better?

[momomom]

I had 13 cavities filled on my 13th birthday!  I think I had this when very young, but back 40+ years ago, no one knew what this was.....you will do OK...plus, new things will be discovered about this disease, new treatments will emerge. 

LOL! Sounds just like me. I have had soooooooooooooo many cavities! I always took really good care of them but it didn't matter. I am positive i have had this since i was a child. I know I have had the symptoms since I was a child. I always had chronic fatigue, aches and pains, and I was sick more often than I was well. I had bronchitis monthly, Pneumonia at least 5 times a year, ear infections constantly, strep all the time, asthma attacks all the time, tons of allergies (environmental not food), I was always anemic and covered with bruises from nothing. The list goes on and on.

I really feel for the kids with Sjogren's because nobody listens to them and it's so much harder for them to explain what they are feeling. I am already seeing the same symptoms in my kids. I will just wait and see for now but I have made their pediatrician aware of the possibilty. They are probably going to do some testing on them soon.   

[momomom]

I have had symptoms since my teens and was officially diagnosed in my early 30s (I'm 34 now).  It can definitely be scary and frustrating to think of all the years ahead, especially when older people say thoughtless things like "Be glad you have your health now!" and "Wait until you're old like me!" and I just want to scream, "At least you got to wait until you were old to feel that way!  I'm achy and arthritic and exhausted NOW!!!"  Instead, I just remind myself that I'm lucky I at least look healthy to others (aside from my red eyes) and that there are worse things to have than Sjogren's.  

I focus on what I can control: taking meds, supplements (like fish oil), eating right, and getting lots of sleep (trying to make that a priority, but I'm a night owl by nature and have a job that gets me up early).  What I can't control, I try to push out of my mind by thinking, "Well, nothing I can do about that, so it isn't worth thinking about now."  

We can't know what's ahead.  They might find a cure (go, Dr. Faustman!!!) or new treatments.  The treatments we're taking might do their job and keep the disease from progressing.  The disease progress might plateau within our individual bodies.  And, yes, we might get worse.  Until that happens, though, I'm going to try my best not to think too much about that possibility.  

Yeah I hate it when people don't understand. I get annoyed when people complain about little petty health issues or colds too, especially my family. They don't understand how hard it is. My mom used to think I was lazy. When I would say "I am so tired" I would often hear in response "oh yeah, me too". Or if I said I felt so achy and terrible people acted like it was no big deal. " I don't feel good" is such a generality. It's hard to make people understand just how bad you really feel and how hard it is to simply function. I try to explain it others as " Imagine you have a really bad flu with fever, aches,chills, fatigue, confusion, blurry dry itchy eyes.............now imagine that flu NEVER goes away". That explanation usually helps me clarify. My family gets it now I think, or at least they don't complain as much about their own health probs in front of anymore lol!

[momomom]

So I guess I'm not so unusual after all. Quite a few people here below the mean age. You know I can't help but wonder............ WHAT do we ALL have in common that could help us figure out why we all have Sjogren's (or other manifestations of autoimmune attacks)? I spend a lot of time just analyzing the whole thing trying to come up with a universal explanation. There are some good theories but still I wonder. I really hope a cure is discovered or at least a cause in my lifetime. I know my mind won't let me stop trying to figure it out. 

[DragonflyC]

AI diseases are likely partly genetic and partly environmental (i.e., we have the gene, but something--stress, a virus, etc.--needs to switch it on).  SJS is especially common in people of northern European descent, but that doesn't mean that only those people get it, of course.  Having others with AI diseases in your family makes you more likely to get one, though not necessarily the same one.

[kimboloco]

I just turned 30 this past week and got diagnosed at 26 or 27.  Bruises, fatigue, dry eyes were the worst.  Give the plaq time- I was falling asleep at work and I dont' have that issue anymore.  It just needs time to build up in your system (for most people).  I fear what the future holds for me, but in the same thought, there isn't anything I can do about it so I just have to keep chugging along and make the best of it for my family and myself.  I hope it doesn't get worse, but I know inevitably it will. 

[inga]

I am hoping that you younger women will feel better than I do at my age, which is 57.  There are so many things I would have NOT done, as well as done, had I known I had AI disease brewing.  I think knowing helps you take better care of yourself.  I burned the candle at both ends.

Also, I hope that medical science will discover what causes this soon, so you can have a better quality of life.

I chastised myself my entire life for not being energetic enough....(I raised 3/4 dozen kids, 4 of them special need adoptions,  and while working as a nurse.)  If I knew I was sick....well....whatever...it's done and gone.  I want to make it to social security, so I can be a pain in the butt to you guys, lol...(just kidding...I don't want to burden any one.)  I have 4 working daughters, in your ages ranges, and I don't want to see them burdened either.

Take care of yourselves, and don't burn the candle at both ends.

[tricia]

Hi

I was diagnosed in January at the age of 30.  I myself am still trying to come to terms with it but this site is great ! I don't have much to say but just wanted to say hang in there and make sure you have a doctor who will really be patient and explain things to you.

All the best !

[momomom]

I just turned 30 this past week and got diagnosed at 26 or 27.  Bruises, fatigue, dry eyes were the worst.  Give the plaq time- I was falling asleep at work and I dont' have that issue anymore.  It just needs time to build up in your system (for most people).  I fear what the future holds for me, but in the same thought, there isn't anything I can do about it so I just have to keep chugging along and make the best of it for my family and myself.  I hope it doesn't get worse, but I know inevitably it will. 

How long did the Plaq. take? Are your eyes any better? Are there any other meds that helped you? If so I will mention them to my doctor. I just push myself every day as hard as I can to just do normal things. It's so exhausting. I fantasize about how it must feel to be "normal", how it must feel to not have to push yourself. I just want to experience what it feels like to not feel sick every day. At least the pursuit of feeling better keeps me going.

[DragonflyC]

Plaquenil can take a month or two to kick in; most people take 200 mg twice a day (regardless of body size or gender).  It mostly helps with fatigue and aches/pains.  A lot of doctors will start a patient on a low course of prednisone for a few weeks to help until the plaquenil gets working (I took 5 mg. of prednisone for two weeks when I started my treatment; I do the same thing when I have a flare). 

Evoxac and salagen both stimulate salivary flow.  I take evoxac three times a day.  My dry mouth isn't too bad, but my rheum wants to help me avoid dental issues and blocked glands.

Restasis helps some people have greater tear flow.  I'm not seeing a big impact, but I use it twice a day as directed anyway. 

Fish oil supplements, flax seed oil, and the like are helpful to many people, especially those with arthritic symptoms. 

Some people here can push themselves without serious consequences (I can to a point when I'm not flaring, but then I crash hard the minute I get a break); some get much sicker when they push their limits.  Make sure that you stay aware of how you are feeling so that you can figure out how much is too much for you. 

Starting on medication may make a huge difference for you.   Some people feel normal or nearly normal after a few weeks.  Some people, however, continue to have problems.  I'm basically OK, but I get tired easily and quickly and have a lot of aches and pains.  It's my new normal, so I deal with it.  It makes me sad sometimes, but I try not to let it get me down too often.

[ErinG]

Momomom,
I think I started most of my meds in February or March 2009.  It's hard to say which one made me feel better because I started so many in a short period of time.  At that point I had already had punctal plugs in both eyes and I had been on Restasis for a couple of years, so my eyes weren't feeling that bad when I started plaquenil. 

I started prednisone after I had a kidney biopsy in March to determine what was causing my low kidney function (aha! interstitial nephritis from Sjogren's).  Everything immediately felt better, I drooled in my sleep, and I was sweating all the time, as opposed to never.  I'm on a much lower dose now, and my mouth still has a lot more moisture than it did before so I think plaquenil has helped with this, too. 

Do I look and feel like a million bucks?  No way, but I feel better than before.  It's hard to feel great after gaining 45 prednisone pounds!  I'm working my way down, I've lost 11lbs since the beginning of the year.

[DragonflyC]

Just an FYI that a low dose of prednisone doesn't cause weight gain.  Sometimes people need a larger dose, like Erin G., which certainly can have a lot of side effects.  A low dose of 5 mg. (or 10 or 15--not sure where the upper limit is, but those are still low) doesn't cause any problems for most people.

[Johnson]

I am 32 & was diagnosed 2 years ago.  I am fairly certain from symptoms and old blood tests indicating I had low white blood cell count that I had it since in junior high.  I have the same concerns that you have though.  I may not have any answers for you, but there are definitely people here who can empathize with you:)

[momomom]

I am 32 & was diagnosed 2 years ago.  I am fairly certain from symptoms and old blood tests indicating I had low white blood cell count that I had it since in junior high.  I have the same concerns that you have though.  I may not have any answers for you, but there are definitely people here who can empathize with you:)

Every time I have had blood tests they said my white blood cell count was very low, even when I was a child. I always asked the doctors why and they would just shrug their shoulders and change the subject. I always asked my mom why I was sick all the time. I wished that i could go play outside with the other kids that NEVER seemed to get sick. My voyage to this recent diagnosis has been absolutely frustrating and ridiculous. I was ignored by doctors my whole life. Everyone dismissed my concerns. I even had a doctor tell me it was all in my head. I had a dermatologist tell me that i am just getting old (at 28). How freaking hard is it to do a simple series of blood tests? It took a minute to draw my blood and a day of waiting for results that clearly diagnosed me with Sjogren's and a lot of deficiencies.
I plan to write a letter to the jerk of a doctor who told me it was in my head (Dr. Abdo). I think it would be cathartic for me and quite empowering. This group has been great for me. Everyone really does understand. I relate to so many of the stories I read here and I empathize as well.

[ErinG]

I was just the opposite, I hardly ever got sick as a child.  My sister and brother always had ear infections, strep, ect., but I rarely got sick.