My name is Joanne, and I am sixty years old. My symptoms began in October of 1995 when I was fifty-six, with my hands becoming very swollen and I was unable to make a fist. They were also very painful.
After about a month I decided to see the doctor, since it was becoming increasingly more painful. This doctor prescribed water pills. He thought I was just retaining water.
After seeing that these pills were having no effect on my symptoms and by now my feet and legs were also swollen and I could not squat down to reach the floor, I made another appointment. At this time he began to think it was arthritis related and referred me to a rheumatologist, who I saw in March 1996, and he diagnosed me with rheumatoid arthritis and put me on plaquenil.
In October 1996, my rheumatologist suggested a research program that he thought I qualified for and I decided to participate, so I was sent for testing. In November the results of the testing disqualified me for the program. I failed the bone density test because my bones were already too thin, and by this time my doctor saw that new symptoms were now apparent.
He asked me when I had first noticed that my skin was thickening on my hands. I told him that I thought that it was just tight because they were swollen. My ankles were now beginning to swell and many of my joints were becoming painful and stiff. Also my mouth opening was shrinking so that it was difficult to open it any wider than an inch, which I noticed when I could not put a small banana in my mouth. The tight skin had progressed to my face, chest and up my arms.
So in November 1996, he had me tested for scleroderma. I had never heard of the disease before and all he said when I asked him about it was that "it's not a disease you want to have." On November 22, 1996 I was diagnosed with diffuse scleroderma.
My medication was changed to d-Penicillamine. I was also having more lung problems at this time. An MRI and x-rays were taken. It was found that there were multiple findings including some minimal thickening interlobular septa, and patchy areas of interlobular septal thickening and a few scattered parenchymal bands. There were some subpleural lines and the lower part of both lungs have the ground glass opacity, more prominent in the right side. Findings were consistent with fibrotic lung disease.
I feel very fortunate that I was only misdiagnosed with rheumatoid arthritis for a short time, and then correctly diagnosed with scleroderma. I realize now that some people wait years for the correct diagnosis.
In 1997 I was on d-Penicillamine for inflammation, Propulsid and Pepcid for acid reflux, and Tylenol to help with the pain. "All" my joints hurt and in October I had to have a cortisone shot in my wrist. It was almost impossible to do my job at work on the computer. My right wrist was to the point that it no longer would bend and was very painful. The cortisone shot helped and I now have almost full use of my wrist. I also developed ulcers in my mouth that seemed to take forever to heal. My energy level was pretty low and I continued to have reflux problems and was short of breath.
In June 1998, I had to quit my job and go on disability. I believe that the Penicillamine began to take effect because the joint pain did start to ease up and my energy level was up. In October I began Cyclophosphamide (chemotherapy) treatments for my lungs, since my pulmonary function test (PFT) showed a decrease, which indicated it was time to take a more aggressive therapy.
After my first Cyclophosphamide treatment, I started getting ulcers on all of my fingertips, which took months to clear up. Later in October, I came down with a cold that I could not get rid of. It continued to escalate until December, when I found myself unable to breathe and in the emergency room. This resulted in being put on oxygen 24-7. Still unable to shake the cold, in January again in the emergency room, I found myself in the hospital with pneumonia or pleurisy. Doctor's aren't sure.
It's now May 1999, and I am feeling much better. I am still on oxygen and taking Cyclophosphamide treatments. I am on Prednisone (15mg), Prilosec, Guaifenesin, and Propulsid. My energy level is up and pain and swelling down. I feel that the future is bright for me. The skin on my hands and face has started to loosen up.
I have been very busy starting the first support group in Arizona. The first two and a half years for me were the worst. Not only were my symptoms progressing rapidly, I did not know another person with this disease that I could talk to. I felt very alone and isolated.
I feel that there is a need for people to be able to communicate with other scleroderma patients who totally understand what you are going through. So I am focusing my time and energy on building the membership of the support group. My goal is to become a chapter so that we can begin to raise funds for research to identify the cause and cure. This is a very rewarding "job" for me.
If there is anyone who has similar problems, I would like to hear from you. If you've completed Cyclophosphamide treatments, were they successful? I wish all of you the best and please contact me if I can help in anyway.
I believe that with God, all things are possible, and so I feel confident that someday, there will be a cure.
~ Update - January 31, 2001 ~
Hi, this is Lis from Canada. Hope all is well. We just returned from three weeks visiting our daughter and family in Arizona. Now I am just resting and trying to get caught up and back into routine. It's cold and snowing here!
Last year while visiting Arizona, I went to the Chandler, Arizona Scleroderma Support Group meeting. I found out about the group on the SCLERO.ORG web site and contacted Joanne, the leader. We planned to meet at the meeting but she was in the hospital so I did not meet her last year.
We emailed back and forth and hoped to meet this year at the meeting. I phoned her and we talked for an hour just days before the meeting. She was such an interesting lady! She was having lots of trouble breathing, though.
We planned to meet at the support group meeting. However, Joanne passed away January 19th, so I never did get to meet her in person.
Both Joanne and her husband Ron attended the Florida Scleroderma conference this year. She worked very hard to get a support group going in Arizona and it sounds like it will continue and grow. I am so glad her work was not in vain.
Shelley, thank you for all your work at making scleroderma information more readily available to all of us. I have made many good friends because we share a common disease - scleroderma. Take Care - Lis
New Email: firstname.lastname@example.org
Joanne's story posted 5-28-99
Lis' update posted 2-24-01
Email note posted 01-24-05 SLE
New Email posted 02-20-06 SLE
Story Artist: Shelley Ensz
Joanne was the founder of the
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