Today I am still struggling. I had to call in sick to work last night. I work 12hr night shift. I only work 2 nights a week but they are rough on my body. I just went back to school and it is a 3yr program. When I am finished I will have a M-F 8-5 job and probably only 4 days a week!!!
My joint pain, fatigue and loss of appetite has been going on since Sept 14. I continue to take Plaquenil 400mg, took a 6day dose pack of steroids and 5day course of Cipro of a UTI.
I went to my Neurologist last week and got news that I also have Neuropathy. He is wanting to talk to my Rheumatologist (who is out of the office till Wednesday) about some kind of infusion.
All I know is that I want to feel better and get back to functioning in my life!!!
Thanks for listening!

Yeah,what Ann said! Lol

I like the comment My highest ambition is a nap!!! Been there

Mandy and Ann - Sounds like you both are struggling daily. I am working M-F, 8-5, but luckily have a desk job. My brain fog is the hardest thing for me to conquer in terms of my job. I don't know if it is the lupus or the gabapentin I have been on for my nerve pain/impingment. I had surgery in June for that and feel much better in terms of the nerve pain. The Rheumy is suggesting I stay on the gabapentin until my plaquenil (just started in July) builds up in my system. Ugh!

I fully understand the desire to "better and get back to functioning in my life!" I think all of us on this site share this sentiment, along with Ann's "highest ambition." :-) I am trying to take it a day at a time and am hoping/praying that the medicine, once fully built up will ease of the joint pains that I am experiening and the fatigue. How long did it take for the plaquenil to make a difference in your life...or did it really not help?

Thanks all and keep your chins up, Mandy and Ann....(Now...if only I could remember what I was suppose to be working on here at the office.....LOL)

It took Plaquenil about 3-4 weeks to help me.

I heart prednisone. It is the only thing keeping me up and out of bed each day… Okay, most days. If not for prednisone I would be back to wishing I had the strength to brush my own teeth and crawl to the bathroom on my own to pee. I tried an immunosuppressant and winging off prednisone. It worked mostly, but not with out prednisone. Then it stopped working. Now I am on 40mg prednisone a day with 4 huge pills of cellcept. I hope the cellcept works and I can get the prednisone down or gone. But until then, I love the stuff! Lol it is horrible to feel its side effects, but I will take a racing heart, shaking body, and sleeping trouble over being stuck in bed.

I am taking the Orencia infusion after being on Enbrel and Remicade. The Orencia is working great for me. Best I had felt in 5 yrs. Increase energy and little pain. I hope that what they use for you will work as well

  • Hi Mandy-Im in Missouri too!!
  • , I hear that people are more prone to more symtoms with immune system problems than a dryer area. When I was in California-I was diagnosed with RA-but coming here I went hay-wire now I have MCTD-mixed connective tissue desease-Lupus and HCM- heart thickening-my face looks like a crack addict-with discoid lupus face and it breaks out with infection because my immune system doesn't heal fast and I have to clean it and Im so frustrated with doctors and I am waiting for the Plaqinil to start soon to help this. I work too but part-time today I didn't go had a very bad night. maybe can you work shorter shifts?? because with this desease - like you said-it doesn't work so well? that's if this job allows-I wish you well friend, g

Thanks in fact you are right-I agree and take d supplement and I have seen a difference. as well. thank lady!

Ann A. said:

Dear Lupus Hater,

Moving from California to Missouri can also have a dramatic impact on vitamin D levels. In some parts of California it is possible for people to synthesize vitamin D from sunlight 365 days a year. Under these conditions even a person with lupus can still get some incidental ultraviolet B (required to make vitamin D). Moving to Missouri is moving to a higher latitude, a latitude with a vitamin D winter where no one is making vitamin D from sunlight for almost half the year. There is convincing evidence that vitamin D levels are associated with the frequency and the severity of lupus symptoms. So getting your 25(OH)D levels checked and supplementing at a rate to fit the new latitude COULD/MIGHT help to reduce the increased severity of your symptoms in this wetter, colder, and lower UV environment.

Good luck.