CNA with Autoimmune disease - page 2

by Riley1234

4,284 Views | 17 Comments

Hi Everyone, Just wanted to introduce myself. I work for a in home care facility and am considering going to school to be a LPN. I have been diagnosed with Evans Syndrome- combination of Auto Immune Hemolytic Anemia and ITP. ... Read More


  1. 0
    Hi! Everyone,
    It is nice to see this thread pop up in my mail. I would like to share one thing I have learned the hard way: living with autoimmune illness means we can go days without ever feeling better, and that it means balancing out our energy expenditures with enough rest. I have to say if I do this, I can NOT do that. Adequate rest is key. I do get awful tired of being in bed 12 hours a night, literally. So don't work too hard,.
    hugs,
    sue
  2. 0
    Glad to know another in the health care field that has had this illness. It can be done. I had the awful pred. for 6 mnths also. It worked for the AIHA but not the ITP. Rituxan put me in remision and my counts are all in the normal range now. When diagnosed my crit was really low an 11. Does your Dr think you may have lupus? Your titer is quite high. My hemo is hesitant to diagnose me with lupus as my ANA hasn't been positive. I do have the APS antibody's also which I guess is a good indicater. Thanks for all the advice everyone!
    Stay well,
    Riley
  3. 0
    My rhuematologist is frequently testing me for lupus since the symptoms I have been presenting along with the lab results point toward it. Also psoriatic arthritis runs on my father's side of the family. My father was diagnosed in 2004, also he was adopted so I dont know much about his hx. My doctor says one autoimmune disease will lead to another. I had the AIHA in 2005 and my Hgb was 6 and I was jaundiced, had a terrible migraine from the tachycardia (my heart rate was 130!) and had brown urine from the high levels of bilirubin. I dont know how much you guys believe in seeing the "white light" but I was so damn sick I saw the "light" 2x the day I went to the hospital. The prednisone made me gain 30lbs in 3 days, and I was hungry all the time! Even since I have been in remission since 2006 I had periods of fatigue and dizziness and went to the ER and my counts were OK but I notice my Monocytes were high, and the doctors said it was "nothing". When I was tested last summer after finally being diagnosed with fibromyalgia, then my doctor ordered labs which revealed the high ANA and referred me to the rhuematologist who then diagnosed me with psoriatic arthritis and Sjogrens.
  4. 0
    Sue you are so right about that. I am the same way, can't get enough sleep. It's taken a couple of years but I have realized that I have to take care of me! Having a family you work, cook, clean the house, shuttle the kids around and you never think of yourself. Make sure to take care of yourself. Keep in touch and stay well.

    Woofy it's amazing my illness presented exactley as yours did. The migraines were incredible. I was jaundiced as well for a good week before I went to the ER. I remember saying to my husband when I arrived home from work that night that I felt as though I were dying slowly. I hadn't felt well in about 6 months but thought it was stress. I did call my PC and described the color of the urine twice and they said I didn't need to be seen it was a classic UTI. I asked didn't they need a urine sample and they said no. Second time said they needed to up the Bactrim. I was the opposite on pred. I couldn't eat and had steroid psychosis. I was sleeping 3 hrs and running around and cleaning everything in site. I was manic... I hope I never have to take that med again. Keep in touch and let me know how your doing.
    Stay Well,
    Riley
  5. 0
    I have been prednisone free since spring 06, and when I came off of it I went nutty! I was so out of control psych wise and physically (I was barfing up alot) that I had to stay with my father for a week! I did lose some of the pred weight but still struggling even now! My counts are at 12 and now with the ANA being high and being diagnosed with psoriatic arth., Sjogrens and possible lupus I now take Indomethacin 75mg BID. I made it clear to the Dr I will NOT take prednisone again because of the weight gain, psych issues with it and coming off of it! He refuses to put me on prednisone! In the 1st month of the AIHA, I was being weaned too fast and relapsed, so thats why the pred. taper took 7 months! I am now ok despite having other autoimmune issues and I am 28! I do have grogginess but I get thru it! I am so glad there are other people out there who went thru the AIHA! I too felt like I was dying and being ignored by the doctors but I think because the illness presents as other illnesses it is so hard to pinpoint it!
  6. 0
    UPDATE: So far I dont have Lupus, but I am still in the early stages of psoriatic arthritis. I now take Indomethacin 75mg BID, and it is working, and this is after 2 med changes (Plaquenil, which made me feel worse, then Naproxen which did nothing) The rhuematologist still checks my CBC's and ESR's. All my CBC's have been normal but my C-Reactive was a bit high, and my ANA is still the same. I still have fibromyaligia and mild chronic pain and I am still goin strong!
  7. 0
    Hey Woofy,
    I'm so sorry that you are in chronic pain. You are so young. I'm going to my appt. at the Brigham & Wms Lupus Ctr in a few weeks. I already have anxiety about it. Some of the kidney function tests pointed to damage and I think I am on my way to a lupus diagnosis. Hope not! Took me two years to deal with the blood issues. Have you been tested for antiphospholiped andibody's? Glad to hear that you are still going strong.
    Stay Well,
    Riley
  8. 0
    I havent been tested for antiphospholiped antibodies yet. My liver levels have been off since the AIHA since my liver took a big hit. Brigham and Woman's is one of the best hospitals and the quality of care is very good. Good Luck!


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