Important Info on Meds (Cytoxan) re Sjogrens .... Raynauds, Lupus

Discussion in 'Fibromyalgia Main Forum' started by JLH, Jun 4, 2006.

  1. JLH

    JLH New Member

    A Story from a Person with Lupus, Sjogrens Syndrome, & Raynauds ....

    by - Geri Lynn, a member of RemedyFind-Lupus


    [NOTE: THIS CONTAINS SOME IMPORTANT INFO ON MEDS THAT SOME OF US PROBABLY TAKE]


    My grandmother passed away from SLE at age 59. She died after one year of lupus diagnosis. She died of suffocation due to Sjogren's syndrome. My mom was diagnosed at age 59 with SLE at the same time I was diagnosed with SLE at age 31.

    During the years of lupus activity, I worked full time as a special education elementary teacher but would sleep 10 to 12 hours after working each day. The physical changes related to 60 mgs of prednisone for 10 years were difficult at times. People who knew me prior to taking this medication would not recognize me because of the weight gain and puffiness in my face. I remember looking at myself in the mirror and thinking someday I will look like myself again.

    As a result of the 100 mgs of Cytoxan for 3 1/2 years, I became sterile at age 31. At the time I was not married, but I did marry a friend after having met 17 years prior. We had supported each other through many of life's experiences through years of living in different locations. We do wonder what it would be like if we could have conceived and bore our own birth son or daughter. We have adopted two daughters, ages 5 & 19. We continue to welcome children and teens into our home through foster care for the past 7 of the 8 years of our marriage together. So even though we have not been able to have a birth child together, we have been blessed in many ways as a family.

    Mom is now 78 and I am now 50 years old. Mom's full flare lasted about 5 years with high doses of prednisone and cytoxan to deal with her kidney function loss. My full flare lasted about 10 years with CNS difficulties. We are both entering another flare of lupus after mom's remission of 10 years approximately and my remission of about 5 years.

    Mom's second flare is primarily skin rash with no signs of blood work to confirm this flair. My second flare is accompanied by a flaring of Raynaud’s (am on Procardia for this syndrome) and Sjogren's syndrome (currently on Mexaline), along with elevated ANA and positive anti-DNA. I would say the Mexiltine, Procardia, and Plaquenil I am currently taking for Sjogren's, Raynaud's and continued lupus remission are all helping over time. It seems the longer a person is on these medications, the benefits show. Mom is currently on 12 different medications with some related to her pulmonary hypertension, COPD and restrictive lung disease (for which she is on 24 hour oxygen). My mom is benefiting from the Humira, Methotrexate, and Plaquenil she currently takes for discoid lupus rash which had effected her whole body. Her main complaint is feeling sick to her stomach and fatigue which is less some days than others.

    It seems that lupus patients today are not treated with as aggressive medications as they may have been in the late 80's, my mom and I being an example of aggressive medication treatment. It is difficult to know if the medications chosen for us in the late 80's were needed, but at that time the physicians determined it to be necessary for our lifespan to continue as our ANA numbers were very elevated. Our current rheumatologist does not consider the ANA as significant in determining medication treatment today for my mom and me, as our rheumatologist did in 1987 into late 1990's.

    We celebrate the fact that we have both survived most of our past generation female relatives who most passed away in their middle 40's. We are appreciative of the years of remission we had both been given after our initial diagnosis and flairs in 1987. We are thankful for each day we are given in this life.


    [This Message was Edited on 06/06/2006]