ninnah
Registered User
(12/19/06 6:28 am)
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Mother and daughter with PP. Steroids and melancholy.
Hi, all of you!
My name is Nina and I am 41 years old. I, am married to most wonderful man, and have five adoreable children. I work at home, houseworks and take care of book-keeping in our little company. I have had iritis since I was 14 and pars planitis for three and a half year. Fortunately I´ve not had much vision loss, have recovered well after swellings. My last flare up started in the end of Mai and now I am taking Sandimmun Neoral /Ciclosporin 100mg in mornings and evenings and 9mg of Decortin / Prednisolon. I have been visiting this site since I was diagnosed with this disease i.e. PP. It has helped me a lot to know of other people in simular circumstances and also to be able to read about pars planitis, treatments and medicins hereof. But now I thought it was about time I introduced my self.
I don’t know anyone else nor have I met another person with PP except my oldest daughter (22). She was 12 years old when she got iritis and eight years later it turned into pars planitis. It has been sufficient for her to use eydrops only and no drugs to take in. But I am worried now because she´s been on eyedrops for months and her eyepressure has been to high, though getting better after appropriate drops defending that. She had a surgery for three days ago, because of a scar on her cornea, something conserning surgery she had for few years ago. The operation went somehow wrong, it did bleed inside her eye and she lost vision completely on that eye. The doctor is though optimistic about her getting her sight again, but it could take weeks or months. I just hold my breath and hope the best for her. I have not heard that this desease would be inheritable but in this case it must have something to do with the genes.
Eyedrops were enogh treatment for me until threeandahalf years ago, then I had to take steroids, and also have had three times injections into my eyes. To start with I took 60 mg. pr. day wich was decraesed into 5 mg pr. day over about five months period. I got better in my eye for a year, but the steroids had terrible affects on me otherways. Soon after I started taking them I got “sky high” I got enourmously active and because of that I had difficulties with falling asleep, and woke up early to keep on with my tasks. There were many tasks, and I felt like I could do anything and felt good. But I had to pay off, as the steroids were decreased I felt more and more depressed until I was mainly lying in bed and couldn´t think about leaving it otherwise than to throw myself into the river or take in all of my medicines. I ended up accepting hospitalization in mental hospital where I was treated with Electroshock therapy and was more or less in hospital for two months.
I think this is rather unusual reaction to steroids, but not unknown. I have a story of light melancholy which I am sure infected my reactions.
When I started taking steroids, I did not find any informations about them that would prepare me for what then happened. Maybe it´s because it´s rare, maybe because people don´t want to share experience about their mental health, at least not if it is bad.
Since this I´ve had bad flare ups once a year, but twice this year. I am in good contact with my opthalmologists and my pshychiatrist and steroid periods have not been so dreadful ever after this first time.
I feel like my illness is connected to how stressed or busy I am or was, I try to take it easy and live simple life. The disease started five months after I had begun to work outside the home. I worked in a quilt shop for four hours a day and did a bit of quilting and patchwork in that period. This was just to much for me with big family. My flare ups have popped up around and after Christmas which is always a busy time of the year and once after a death of a near relative
I hope my writing will come to good for someone I apologise my english it is rather poor and when it comes to anatomy it´s not better! Thank you all for sharing your experience.
Best wishes,
Nina.
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