- Scleromyxedema
- Interviews
Jda's interview
How did all start?
Small rash on left wrist
Do you already have a diagnosis? How long did it take you to get it?
Yes. It took a year
For what medical specialties have you been treated? What has been the most useful specialty for your?
Methotrexate, mmf, and various other drugs in this category. Then went on to ivig which cleared my skin within 4 months. Vein access via cannula was getting more and more difficult. I had a portacath put in which became detached within a month. I had a second one put in which developed a blood clot. I was therefore recommended to switch to sub cutaneous but unfortunately the drug is no longer working. I am also on a biological (abatacept) intravenously via a midline.
What has been the most useful thing for you so far?
IVIG
What have been your biggest difficulties?
Switching to sub cut for immunoglobulin. Getting continuous funding for treatment.
How has your social and family environment reacted? Have your social or family relationships changed?
No
What things have you stopped doing?
I can’t walk for long periods of time, I can swim due to constant midline, I can’t play the piano or do much with my hands.
What do you think about the future?
Am hopeful there will be a cure or at least reduction in pain and improvement with skin
