help

[Karyn]

Hi, I just signed up and don't know how this works. How do you post without starting a new topic?  I was diagnosed with sjogrens/rheumatoid arth on Sept. 1. have been unable to work since July 5.
Karyn

[Patze]

Hi Karyn,

Let me welcome you to the SJS World!  Please do look around the board when you can as there are tons of topics and oodles of information that you just might find useful/interesting.

When you're in a topic and you want to respond, go to the last entry and press the reply button.  That should do it, but if you still have a problem with it, please let us know. 

Again, welcome and let us know a bit more about yourself so we can get to know you.

Take care -

Patze

[Karyn]

Thanks Patze,
I'm 5y. had thyroid cancer in 97 When my levothroxide needs changed I am always fatiqued, out of breath, brain fog, etc. so thought that was what was wrong this summer, should have known better since mouth was so dry I couldn't talk or eat right, and eyes were dry. anyway I got so wonr out I couldn't go to work, went to Dr. instead, they sent me straight to the hospital.  I was terhe 3 days, had 8 ekg's and about 12 sets of blood work and numerpous other tests.   The only thing that was positive was for rheumatoid arth.  My SED rate was 119 and ANA was 1265. Family Dr. was sure I had lupus. Sent me home with step down prednisone and appt. with rheumatologist on Aug. 13.  I was so drug out I couldn't even talk without getting out of breath, but when the prednisone kicked in I started to feel almost normal. By the time I has my appt. I was about back to where i was when I went in the hospital.  They did a series of blood work and numerous ex rays and put me back on a daily dose of prednisone until Sept. 1 when I went back for diagnose, which was rheumatoid arth./sjrogrens. They kept me on prednisone for 2 weeks as well as putting me on methotrexate once a week.  I take it on Wed. aft. and by Tues. an starting to feel pretty drug out. Still not back to work since July 5.

[Patze]

Hi Karyn,

I'm sorry that you've been through the ringer, but it sure sounds like you have some on the mark doctors, lucky you!!!! 

I'm still working, no choice as being a single type - ugh.  I'm not nearly as exhausted as I was when all of this started, but I still have a way to go before I feel "normal" again, eh, one day. 

Again, welcome to the SJS World, and I hope that I can chat with you soon!

Take care -

Patze

[Karyn]

I need to be back at work (don't have insurance) Dr. said I could go back light duty, no more than 5 pounds, on Sept. 16, but i do home care and they didn't have anyone suitable.  My husband had to go back full time even with retirement pension to pay bills. Last Thurs. I was very dizzy all day and then my hands got real shaky, they are that way again today. Does this have anything to do with disease or meds?

[Chickpea]

Hi Karyn

Welcome to SjS World!  As we always say, I'm glad to meet you but sorry you have to be here!  It sounds as though you've had a rocky journey here.  Good to hear that your doctor is taking your symptoms seriously - getting tests done, and treatment started.  Lots of people here wait for years before getting a diagnosis.

The methotrexate seems to be helping - are you still on Prednisolone as well?  I don't know about side effects of these meds so it could be that the shaky hands and dizzyness are to do with them.  On the other hand they could also be due to the SjS.  Or to a virus that's arrived all by itself.  Have you had your blood pressure checked recently?  Low bp can make you dizzy, as can being dehydrated. 

Lots of us here find keeping a symptom diary really helps.  It's hard to remember what's happened otherwise - brain fog is a common SjS symptom - and also hard to see patterns of flares and better times.  You only need to jot down a few things every day but it is helpful for you and your doctors.

Please come and visit often, and let us know how you are feeling.

Thinking of you - Chickpea

[Scottietottie]

Hi Karyn 

Welcome to Sjogrensworld.

I hope you find the site useful. It's certainly a friendly and supportive place to be.

Take care - Scottie 

[lynnmarie219]

Hi Karyn,


I would also like to welcome you to Sjogrens World. Feel free to read all that you can here and ask any questions that come up! This is a safe and supportive place to be and everyone who comes here really does understand as we have all "been there" in one form or another!


WELCOME!!!

[Karyn]

Thanks,
This is my first time to do this. I don't know anything about chat rooms.

[Karyn]

Have been off predinisone for 2 weeks, was a little scared to take yesterdays dose of methotrexate, but feel pretty good today. I took my blood pressue myself last week when I was dizzy, it was 117 over 74, the doctor I have is about 50 minutes from home, I had called her about it and she didn't think it was the meds since it was my 5th dose.