Hi! I am also new here but not to lupus

Hi All!

  I am a soon to be 47 yo with a Dh and 2 teens.  I work part time with autistic preschools.  Between my kids and work I am very busy.

I have been diagnosed with lupus and sjogren's for over 4 years now and I do know that I have had sjogren's for years.  Was taking prednisone, plaquenil, celebrex and a few others for the 4 years. I was doing relatively well until the beginning of this year.  My normal meds were keeping me leading a pretty normal life.  I am a runner and was able to maintain my mileage and complete half marathons.  The rheumy was always amazed by my energy.  To think that I would complain about being tired after running 10 miles.  I had aches but I lived with them and chalked them up to running or working with kids (my thumbs hurt often). Well, the wheels fell off.  After all this time I am now dealing with fatigue.  My doc upped my prednisone and that didn't help.  He also has me on MTX which made a minor difference.  Next we are trying TNF drugs which I know is not really prescribed for lupus patients from what I am reading, but in some cases it is.  I do love my doc and trust him.

I guess I want to know if anyone has had symptoms change?  My doc said it is unusual for a lupus patient's symptoms to change if you have had the same ones for years.  Most of my problems are my eyes and mouth.  I get eye infections all the time and have cataracts already due to prednisone. I am really sad because I try to keep running and it is nowhere near what I was doing and I get extremely wiped out when I do.  My mood swings are up and down because of this and I am normally even keeled.  It is just so unfair that I have to limit what I love doing. All I keep thinking is that I will stay the way I feel from now on or get worse.  Just needed to share with people that understand because I feel like no one wants to hear that I am tired yet again.  It seems most people don't get it.

Jeannie

Thanks for responding.  I should have been clearer.  My mood swings are because sometimes I think about all I have lost due to lupus and I get very upset and sad.  Then I will try to think about how much I can still do and what I have and feel better. That is what I meant. I have always been a relatively happy person and I hate being sad.

TNF drugs are enbrel, humeria and a few others.  They are not really given to lupus patients but to RA patients and people taking those drugs have developed drug induced lupus.  That is about all I know. The drugs have made a huge difference in other autoimmune diseases.  My doc is pretty up on things so I will trust him.

Post Edited (runningjeannie) : 5/30/2009 9:14:13 PM (GMT-6)

Hi Jeannie, before I was diagnosed, I used to run 10 miles a day. I would come home and take care of my baby and work at night. Then I started with symptoms. They get better ...they got worse. I am now 51 yrs old and my symptoms have gotten worse these past 4 yrs. The loss of myself is what is the hardest to accept. The weight gain and water retention is rough. I used to be very thin, toned and full of life  . Prednisone really does little for me when I am in a flair. In truth, THE thing that works is sleep. Accepting that I need to take a nap when I get home from work is hard. That seems stupid when I step back and look at it, but it is just one more thing that gets in the way of who I used to be. Slowly I am learning to accept what is and look for the blessings in the moment. This disease has strengthened my faith and sometimes after a really bad spell(like I recently had), things taste and smell better! Holding my grandbabies is indescribable! Does this make sense? I hope so. Blessings to you. Tammy