SCLERO.ORG is retiring 4-24-2021. Thank you for the memories! You'll still find us in the Wayback Machine, and we'll carry your stories in our hearts forever.
Patient & Caregiver Stories Main Menu

(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

Lisa R: Difficult Diagnosis, Scleroderma?

"I do not know what this is," said my doctor. "Go to a neurologist."

Tea Trees for Lisa by Sherrill Knaggs, ISN Artist My story started five months ago when I woke up one day and out of nowhere, my fingers were tingling and a bit swollen. I thought it was nothing in the beginning, but after two months I went to my doctor. He told me, "I do not know what this is. Go to a neurologist."

Well, the neurologist did not know what it was either. After talking to a few people I decided I need to go the rheumatologist with no help from my primary doctor.

When I got to my rheumatologist they did blood tests. Everything came back normal except a positive ANA test of 640. They sent me home with some anti-inflammatory medications and a shot of cortisone. None of this helped.

The next time, I went to the rheumatologist after doing some homework on my own. I asked about Plaquenil and started on this. It gave me a lot of relief of my symptoms, but my fingers are still very swollen, hard, painful and difficult to work with. This relieved the pain symptoms, but they still looked pretty bad.

I heard about the Minocin medication and went to Boston to Dr. Trentham. (Webmaster's note: This treatment has since been found ineffective for scleroderma.)

He told me to stop the Plaquenil and get on Minocin. He told me that if I have the Limited Scleroderma it could cure me. He, as well as the other doctors, all told me that they think I have scleroderma, but they could not swear to it. My Systemic Scleroderma test came back negative. Now I wait for my Limited Scleroderma test to see if that is positive or negative.

I am going to give Minocin a try even though I have to pay $250.00 a month for it because I have no insurance for medication.

Can anyone tell me if Plaquenil has helped them for scleroderma? Also can anyone tell me how dangerous Minocin is for long term use like three years? Can my liver get damaged? If I ever need antibiotics for an infection would my body be immune to any antibiotics like Tetracycline which is a very important antibiotic? One day I might need it for something else.

My doctor here in Florida where I reside, was not too crazy about me taking Minocin, but Dr. Trentham says it is great. Please if anyone can tell me more about what I have to look forward to and what to expect with this medicine I would appreciate it.

I made my story short believe it or not. Thank you all for listening.

To Contact the Author

Lisa R.
Email: [email protected]
Story edited 10-20-02
Story posted 10-26-02
Difficult Diagnosis
Limited Scleroderma
Ineffective Treatments: Minocin
Systemic Scleroderma

ISN Story Editor: Sherry Jo Young

Sherry Jo Young was the ISN Story Editor for this story.

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

Go to Lisa S: Morphea Scleroderma

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

International Scleroderma Network (ISN)