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smjohn
07-01-2006, 02:46 PM
Hello, I am a 35 year old, mother of four. I was diagnosed with CNS lupus/brain vasculitis in august/september 2005.

My labs have slowly improved, but I wish I felt as good as my labs look!! I am constantly fatigued, dizzy, achy, migraines, foggy brained. I am 40 lbs overweight due to meds and inactivity. I try to use my treadmill, but most times I am too fatigued. I do fine with my daily activities at home and caring for my kids, but I must rest frequently.

I was an Oncology Registered Nurse up until July 2005. That's when I became ill and was unable to work. I am still unable to work and cannot drive due to dizziness. It stinks. I feel so useless.

I hate my weight gain, I wish I could wean off my Celexa, but when I tried I got awful withdrawal symtoms.

I am on Cellcept 1500 mg a day and 1.25 mg of prednisone a day. I had been on 80 mg of Prednisone a day at the beginning!! So, at least that has decreased.

I also have anticardiolipins, but they have decreased. I am on aspirin for that. I do not have antiphospholipid syndrome.

I just get so discouraged. Will I ever get better? Is this what my life is going to be? My husband and my kids have been great, but I know it is a strain on them as well.

Sorry for the rant! The fatigue is so bad lately, can it be from tapering of the prednisone?

Thanks for listening :)

SoleSinger
07-01-2006, 03:43 PM
Welcome!!

WOW!!! 80mgs of Pred. to 1.25 in less than a year??? That's GREAT!!!

I've only been dx'd a little less than a year, too... And while they say my blood work is stable, I pretty much feel like crap all the time... So, I feel your pain!!!


Where did you start on CellCept? Did you have to go through cytoxan treatments?

I know what you mean about the weight gain! Though, I'm still lower than my heaviest weight; So, I still consider that a personal victory!! LOL!

My rheumatologist recommended going to an arthritis foundation sponsored pool... Not as hard on the joints... And it's warm water so it's like exercising in a big bath tub! It's nice!!

I hope you feel better soon!

This is a great board, glad you found it! :):)

ButterflyRN
07-01-2006, 07:24 PM
Welcome smjohn! I too am an Oncology Nurse! I'm 27 and have lived with lupus/lupus nephritis since I was 11. I now work part time (due to a recent flare) on the weekends in an infusion center. I too can appreciate the weight gain. The prednisone has been decreasing but for the last 2.5 months I've been on 30 mg of prednisone a day. I am also on cellcept 1500 mg but twice a day for my kidneys. We're glad to have you apart of our family and are here for you. Feel free to rant anytime you'd like :lol: :lol:

smjohn
07-01-2006, 08:02 PM
I was placed on Cellcept right away. I requested it due to the fact that my brother had to have a kidney transplant at age 35. They were never really 100 % sure why his kidneys failed. I didn't want to take any chances. My complement levels were very low and I had a positive C1Q, which I found when I researched it that it could mean my kidneys were affected. My labs have responded well with the prednisone and Cellcept.

Wow - living with lupus since 11!? Kudos to you that you are still working. Do you find it hard? I became a nurse in 2003 and just had passed my certification in April 2005 as an Oncology RN. I don't know how I could function as a RN now. I am so "foggy brained" at times. My rheumie advised my area of work was too risky due to the high levels of infectious patients. I was working on an inpatient oncology unit in a hospital. We had alot of MRSA and patients with heavy duty resistant "bugs". I loved my work though. It is so sad to think I won't be a nurse again. :(

I just wish I'd feel better. I feel like a "slug" most days.

Thank you for listening. I'm glad I found this board :D

ButterflyRN
07-02-2006, 10:53 AM
I started right out of school working night shift on a medical/oncology inpatient unit. We we're dealing with all kinds of MRSA and your occassional TB and Menigitis. I tried to avoid getting those patients. I'm actually studying for my oncology certification now and hope the beginning of next year I'll take the test. I do find it hard to work now. I've been battling a flare for the last year and working on the unit - which I finally was transitioning to days was just too much for me to do full time. I found my present job this past september to work part time Fri-Sun. I don't know if I can work full time again- especially because my husband and I are planning to adopt this fall. Luckily my Saturdays and sundays are low key days and it works well for me. My employer is great too with working with me and my health problems. I hope you have better days soon! :lol:

smjohn
07-02-2006, 11:14 AM
I'm sure you'll do well on the test. It was tough, but I found that using the study guides and online quizzes(CD ROM) helped alot.

I hope to go back part time at some point or per diem. I will have to get a job off the floor though.

Right now I am just trying to get my strength back.

Missy
07-02-2006, 02:46 PM
Hi smjohn -

S, like you, been on Cellcept, was really bad at the beginning, but labs look much better now. But, it doesn't mean I'm all better, even though I might get to try to get off the Cellcept in the fall. I already weaned off the prednisone, and that helped in and of itself. So, I still have good and bad days now, but at least my bad days are still better than when I was really bad, and that keeps me going. I can now work part-time, after not being able to work for 14 months.

I wsh you healing,