HISTORY: Hi, my name is Sue Raleigh. I’ve been married 28yrs, mother of two and grandmother of one. I live in Webster, N.Y., a suburb of Rochester and have lived in this area my entire life. I worked full time as a nurse and had a very active life style until November 4, 1994 at which time my full time job became recovery from a severe onset of Adult Still’s Disease. I will attempt to write a short history of my disease.
1994 started out o.k. but by Feb. I developed a virus from which I suffered a temp of 101-102F, body aches, enlarged lymph glands and extreme fatigue. I missed two weeks of work but on return to work felt only some better. I was again sick in March and April with enlarged lymph glands, low grade temp, staggering gait and of course extreme fatigue. I was able to continue working but life was not quite the same. I needed increased amounts of sleep, sometimes as much as 10-12 hours a night.
Then in July 1994 I started with episodes of a weird rash that looked like hives, it was raised and pinkish/red, and it would come at night but be totally gone in the am. The rash would be present only a few nights a week and would appear on different parts of my body. The glands in my neck were again enlarged to the size of a walnut and painful to touch, joint pain, headache and fatigued as usual. My MD started seeing me every 2 weeks and in Sept I was sent to a surgeon. They both felt that the glands had reduced in size over time and it was best to wait it out. I also had several blood tests by this time and all results were normal. Looking back all of this was probably the start of AOSD.
Life went on pretty much like usual except for my overwhelming fatigue and intermittent rash until Nov 4,1994 at which time I became severely ill. I had violent shaking chills, temp 101-106F, severe night sweats that required bed and clothing changes 4-5 times a night, profound fatigue, itchy skin, daily rashes that only faded slightly during the day, and the glands in my neck had exploded in size and became very painful. I also developed severe stiffness and pain in all parts of my body. I was admitted to the hospital, seen by many specialist and numerous tests performed (many of which were abnormal) but no one could figure out what was wrong with me. I was released from the hospital 10 days later on high doses of Prednisone which only gave me partial relief of my symptoms. Unfortunately the prednisone caused steroid induced diabetes, hypertension, and acne not to mention a 50lb weight gain. My other med included NSAIDS, flexeril, sleeping pill, Darvon for pain, Zantac to protect my stomach, a pill to control the diabetes, and a high blood pressure pill. Later a pill was added to control the chest pain I was experiencing. After discharge from the hospital I was seen by my MD’s once or twice a week, went to physical therapy three times a week, and had numerous tests performed but, the doctors remained stumped.
On May 31, 1995 I was seen by Dr. Micheal Wineblatt (famous rheumy) from Boston, who was visiting Roch and he diagnosed AOSD. At that time I was started on Plaquenil. My general condition has very slowly improved over the two years I have had AOSD. At first I was so weak I needed assistance with even the easiest tasks but with time I can do most household chores except heavy work such as floors. I have progressed from needing a wheelchair to walking 30 minutes a day. I no longer need a ride to the MD appointments or grocery store as I can drive myself short distances. It took awhile but I am again independent in many tasks. It feels great to have life back to near normal, but sadly I do not believe life will ever be quite the same. I continue to experience fatigue, require 10-12 hrs sleep each night, experience pain and stiffness in joints and surrounding muscles after performing simple tasks, require freq rest periods to complete tasks d/t decreased endurance, increased time to complete tasks (it takes me all week to do what I used to do in one day), have intermittent low grade fevers, and of late have again started with daily still’s rash. My plaquenil was increased to 200mg 3 times a day and my MD is thinking of starting me on Methotrexate d/t this increase in symptoms and elevation in my serum ferritin level.
Luckly, I was able to wean myself off Prednisone by July or Aug of 1995 and have fought to stay off it since that time d/t the complications that I suffer when I’m on it. I have not been able to return to work and wonder if I ever will as performing tasks for extended periods increases my pain, stiffness and fatigue and is only relieved by extended periods of rest. My symptoms are much worse on cold and/or damp days. Because of this we are considering a move to the dry warm southwest. I would be very interested in talking to anyone who has AOSD and lives in that area. In fact I would like to talk to anyone about AOSD symptoms, treatment, meds, recovery, etc. There are so few of us we need to stick together and help each other as much as possible.