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#1 beedee

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Posted 13 January 2008 - 03:06 AM

I went to see my Dermatologist on Friday, and it all made me feel quite overwhelmed! From what I can figuire, my Dermatologist really didn't expect the morphea to spread as much as it did. I had a whole different feeling from this appointment, it was on a much more serious level. He's taking a more aggressive route with the treatments. Right now I am using an immunosuppressant and steroid. He said that the steroid I am currently using is not going to work on my hands because the skin is so much thicker, as compared to my chest. He has prescribed a much stronger steroid. I will also be starting light therapy 3x weekly in the next couple weeks. The thing that confuses me, is that when the immunosuppressant, you are not supposed to have a lot of exposure to sunlight, I never thought about this until after I left the Dermatologist office. I guess we're going to have to contact him on Monday. He also prescribed a steroid injection, which will be the next step if all or this stuff doesn't work. He gave me the prescription and said to get it filled right before my next appointment, which is April 18th, if I feel that it is not improving. He said that if none of this stuff seems to work, the next option is a pill-form medication, but he says it can cause a lot of side effects, a lot of them long term. He will avoid this if he can.
The Dermatologist also ordered the scleroderma bloodwork, he wants to see if there is more to this than morphea. He said that there's only about 5% chance of it being scleroderma (and not morphea). I have to get this done sometime this week, and it will take around 6-7 weeks to come back. He said that they will contact us if the results come back showing scleroderma, and I would have to go on a pill-form medication right away. He's hoping that we can just blame all of the tiredness I've been feeling on the holidays.
We also asked him how this is affecting my immune system, and he said its really my immune system affecting me. It seems to be overactive and it needs to be brought down to a reasonable level.
All of this still makes me feel very overwhelmed, its hard to take it all in. Just hope that everything turns out well and I can put this behind me at some point in the future.

#2 Snowbird

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Posted 13 January 2008 - 05:38 AM

Hi Beedee

This disease is so confusing that I think it is always overwhelming, unfortunately that is something we all seem to be stuck with at times.....but, in time, hopefully you will feel a little less scared and whatnot. Then, with any luck, things will pull together and start making more sense for you without scaring the whits out of you. I found that now when I go back and read things that I read in the beginning...I don't remember reading them at all (I'm sure it was just because I was so scared, my mind didn't process as fast as the fear did and I think that's very normal when dealing with something so scary)...that might be what is happening to you? Try to take notes and maybe later that will help you to sort things out. I'm also fairly new and I don't know very much about those medications or light therapy yet...but I'm sure someone else will be able to help you sort that out. Take care.
Sending good wishes your way!

#3 beedee

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Posted 14 January 2008 - 01:27 AM

The confusing nature of the disease does make it harder. I just felt that at my appt on Friday, things were brought to a whole new, scarier level. Just taking it a day at a time and hoping for the best.

#4 peanut

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Posted 14 January 2008 - 02:15 AM

Hey Beedee,
I'm glad you're doctor is serious and proactive about your condition. I, myself do not have morphea but I've read quite a few people who do have it use light therapy with success.

Call your doctor's office on Monday and ask your doctor your question. Never be afraid to ask them questions afterall that's what they're there for.

When I go to an appointment I take a paper with me with all the questions. Never be afraid to ask and be sure you understand the answer because learning about your own condition is an important key in becoming your own advocate. You are your own best weapon when it comes to getting the care you need.

Doctors always ask specific questions about such and such test elevently billion years ago and I barely remember what I had for breakfast, so I keep a written record of every appointment, tests, and symptom just in case. Sometimes little symptoms end up being significant and it never fails that a doctor will ask... so, when do that symptom start?

I hope this helps, peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#5 beedee

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Posted 15 January 2008 - 05:48 PM

Thanks Peanut!
My Dermatologist has been great, don't know what I would have done if he didn't come to our area, I saw him the first week he came here. The closest dermatologist besides him is a 3 hr drive away, and I haven't heard great things about him. Hoping the light therapy goes well, makes me a bit nervous to start something new.
Never got a chance to call about the protopic yet, I am not on any ointments this week(I am required to take a 7day break), so its not a big deal. Going to try to call him on Friday. I am assuming he will take me off it, as it could be harmful.
Danielle