Hi! I am also new here but not to lupus

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New Member

Date Joined May 2009
Total Posts : 2
   Posted 5/29/2009 5:14 PM (GMT -6)   
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.

Regular Member

Date Joined May 2009
Total Posts : 27
   Posted 5/29/2009 7:56 PM (GMT -6)   
Hi Jeannie,

I too, am a New Member here. I've been on methotrexate, plaquenil and dapsone for about 5 years now. I'm now 50 and looking
at pre-menopause. I'm wondering if perhaps your mood swings could be related to the beginning of menopause? When I had a
flare several years ago, my rheumy put me on prednisone with the goal of getting off it when the immunosuppressant (methotrexate)
kicked in. Thankfully I was able to be completely off of prednisone about 2 years ago. I'm now on some hormone replacement
therapy for some mood and insomnia issues. I know you may be a bit young for premenopause - just a suggestion.
Pardon my ignorance, but what are TNF drugs? And you are correct - because we often don't look ill, most people don't get it!
Take care.

New Member

Date Joined May 2009
Total Posts : 2
   Posted 5/30/2009 10:11 PM (GMT -6)   
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)

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 5/31/2009 6:29 AM (GMT -6)   
Hi Runningjeanie and welcome to our forum. Several of us on the forum used to be runners. Although I quit running at 40, I took up swimming and had to quit that when lupus struck in 2003. All of us have gone thru the greiving and the grief continues for our old lives. Allow urself to cry and beat ur pillow (if u have the energy). As for the drugs, methotrexate takes a while to work and I was on it a year. Imuran didn't work for me, but I've had good success with Cellcept. I will tell u that my symptoms were pretty bad before my rheumy put me on Cellcept. I hope u get some relief soon RJ. Keep us posted, ok? Love, Butterflake

Systemic Lupus ('05), depression, fibro, cns issues, sjogrens, diabetes, gerd, hypertension, IBS, stage 1 kidney disease, Rx: Cellcept, plaquenil, prednisone, celebrex, lisinopril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin, xanax, ambien, actonel, tylenol arthritis, neurontin, flexeril, nasonex, phenegren, swish & spit, vitamins, fish oil.  Acupuncture  "Welcome to lupus, where the strange is ordinary and nothing is normal." Donna 

Regular Member

Date Joined Mar 2009
Total Posts : 98
   Posted 6/2/2009 7:02 AM (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 smilewinkgrin  . 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 

I have SLE, Raynauds, mitrol valve prolapse,Haushimotos thyroiditis.
Meds I'm on are Prednisone, Vitamin D, Hydroxchloiquin, amitriptylin, levoxyl, colchcine, mobic, flexeril, and lyrica
Rom 8:18-19 "I consider that my present sufferings are not worth comparing with the glory that will be revealed in us." 

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