New to all this...

[hroper717]

Hello everyone,
  I am a 25 year old female experiencing my first flare-up ever.  I was actually diagnosed when I was 14 with Sjogrens, but have had very few symptoms.  Some dry eyes and mouth, and occaisional joint pain if I overdid it, but nothing major.  Very few people outside my family knew anything about my sjogrens and I rarely talked about it.  6 months ago, I had my wisdom teeth removed and its been heck since then.  I started breaking out in hives, and have not been hive free for more than 2 weeks at a time since then.  The fatigue and joint pain have been extreme and at times unbearable.  I have gotten sick at least once a month with sinus infections, fevers, bladder infections, etc. and the antibiotics cause allergic reactions more often than not.  I finally hit a wall about two weeks ago when I got sick again and pretty much lost what little hope I had left.  I was looking into going on disability at the recommendation of my HR manager.
    I have never met anyone else with Sjogrens and while I do have a great support system, I wanted to talk to people who understand when I'm talking about my symptoms and frustrations.  My best friend found this website when she was searching for more info on Sjogrens and reading all the posts today does help and gives some comfort.  In the past week, my hives have slowly been clearing up, as most of my other symptoms.  I'm not sure if this is temporary like all the other times, but for some reason it feels different.  I feel like I'm getting my hope back and the ability to be optimistic.  Even typing this I feel like a weights lifting off my shoulders.  I'm curious if anyone has experienced a flare up like this?  I did rounds of steroids and them went on plaquenil, but ended up in a hospital cause my stomach was so messed up from all the meds.  My rheumy said chronic hives aren't common for Sjogrens, but has anyone else gotten them during a flare??  I guess I'm struggling with the loss of my "normal" life as I knew it and finally dealing with my diagnosis.  I guess thats enough of my rambling for now, but if anyone has tips or pointers, I welcome anything!

[genko_b]

Hi there and welcome. So sorry to hear you are having a flare. Many of us got involved with this site after or during a flare such as yours.

As far as hives are concerned, many people here have experienced hives. Hives are one way your skin responds to something in the system that it perceives as an allergen. Doctors may say it is not related to Sjogren's, but it is an auto-immune response.

Many of us have multiple auto-immune diagnoses - we seem to collect them over time. What that means is that whenever one set of symptoms acts up due to an over-active immune system, many of the symptoms of our other AI conditions will go along for the ride. Perhaps technically speaking hives are not part of the bag of symptoms doctors call Sjogren's, but it is not out of the ordinary for someone with Sjogren's to experience hives when their Sjogren's flares. I hope that makes sense.

Genko

[lynnmarie219]

Hi hroper and welcome to Sjogrens World!

Your right...it helps to know that you are not alone in this Sjogrens journey and that there are others in the world who understand just how you feel. I'm glad that you are finding the information here helpful and are already finding comfort in the posts that you have read.

Keep coming back for as much information as you want or need and feel free to jump on in whenever you feel comfortable doing so...and along the way you will find  a lot of comfort, support , and friendship from people all over the world!

Welcome to the family and I hope that your flare subsides soon and you feel better!

[txacctgcat]

I was diagnosed at age 17 and really didn't have any issues (except in the winter).  Then when I hit 30 everything started getting worse and worse.  I have Primary and the flares would last for days - joint pain and fatigue so bad that I thought my heart would stop beating.  Then I was put on Bextra and it was a miracle drug for me...until it was taken off the market.  Now I'm 47, still have flares that last only 3 to 4 days an average of twice a month.  I have been taking Plaquenil for over 2 years and my Rheumy says that these flares are "normal".  I work full time and so it is starting to REALLY take a toll on my work life.  As for my regular life, I drive home exhausted and take a nap for 2 hours.  then spend the rest of the evening in a stupor.  I hate this but right now I have to keep working.  I'm trying to find a part time job (hard to do in this job market) for Accounting or even a telecommuting position.  Thank goodness I have no kids and my hubby is the best thing that ever happened to me.  Besides this site.

I wonder if SSI would be the best thing for me...lucky my medical is thru my hubby's work and it is the greatest..my drugs only cost me about $250 per month.

How much would SSI pay?  Is it based on a percentage of your last salary?  or what?  I wouldn't have much problems with confirmation of the diagnoses...it was confirmed by NIH within 4 months of the original Rheumy's and my current Rheumy has the lab reports and such.

Just curious...I would like to be able to do something besides go to work and stay in bed when I'm not...

Denise

[Bernice]

Txa,

Hi! I was reading your post able to relate to everything, until I got to part about $250.00 per month meds. Is this before OR after insurance?? My, but that seems like a awful lot of money!!

Bernice

[Scottietottie]

Hi hroper 

Welcome to Sjogren's world. There  are quite a few people in here about your age. (I'm not one of them - I'm in my late fifties) It's a good site for getting and giving support, for asking questions and also for venting - when there's a need to!

Take care - Scottie 

[SLEEPY101]

I had a difficult time working full time and thought about quiting and going on disibility.  I was able to change positions at my job so I only have to work four hours a day instead of eight.  That has helped a lot.  I am able to take a little nap after work before the kids come home from school. I am able to function better.  I still have my bad days, like today I had to call in sick.  But I am able to go more places on the weekends then I used to.  I pay about $250 dollars in co-pays for my medications also. So my salary goes to my meds and dr visit co-pays.  The amount you get paid on Disibility is a percentage of your wages. You would also qualifiy for Medicare. 

[txacctgcat]

Thanks Sleepy for the information about the $.  I'm going to try to get my current employer to let me work from home...but it is a small company with less than 15 people.  So they are not "required" to.  But they keep telling me how valuable I am...hmmm.

Bernice - yes that is AFTER insurance...I take 10 different drugs a day.  It is much better than with out insurance, trust me.  I thank my husband every day for working for a great company with excellent coverage for both of us.

Denise

[Bernice]

I agree! Thank God that you do have a great husband with great job and great coverage! I just think this is alot of money, especially IF someone does NOT have the money or insurance coverage. it just made me think of the many others that are NOT insured and what it must be like for them having to pay so much per month. It's just that my heart goes out to those not able afford their meds.

We have had others on this forum stressing over not being able to afford meds.

Take Care!
Bernice

[wordnerd]

I pay about $600 a month in copays.  Yes you read that right.  I'm on 28 medications though...

[Bernice]

My goodness!!!!!!!