Someone asked why I stopped writing. No reason other then, at least as far as Scleroderma is concerned, I don't have much to say. Everything seems fine and I head back to Johns Hopkins Scleroderma Center in Baltimore in 1 month for a checkup with Dr Wigley. I'll have something to report then.
So other then constant rain where I live and summer not yet showing up in full force and the school year coming to a close, it's been quiet. But everything is fine (health wise) so I haven't updated the blog much. But I'm still here, still have Scleroderma, and I will continue to post.
Stay well.
Thursday, June 18, 2009
A quick post
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6 comments:
Are you still on Cellcept? Is it being lowered to eventually eliminate it?
Yes, I'm still taking cellcept. When I have my next visit I anticipate going off it completely.
When I was last at the doctor in January, I was on 2 500mg pills per day of CellCept. A couple months ago, I dropped it down to 1 pill a day to see if it had any adverse effect.
I also made the decision to drop the dosage of ibuprofen I was taking., I was around 3-4 pills per day with each pill the equivalent of 3 Advil. I am now taking just 1 pill a day in the morning.
Do you have limited or diffuse scleroderma?
I guess it depends what the specific definition of the type of systemic scleroderma you use is. I grabbed the following differences:
• Limited means that the skin involvement is limited to the hands (although the face and neck may also be involved).
• Diffuse is when skin tightening also occurs above the wrists (or elbows, see below).
I had skin tightening primarily below the knee, below the elbow, my face, my neck and the upper half of my torso.
If you have a different definition, post it and I can pick which form based on your provided definitions.
No news is good news in your case! I wish you well at your next appointment. Of course you are planning to stay the course with your treatment but have you ever considered an antibiotic protcol? I wonder what Dr. Wigley thinks about this. I don't have SD but have a few friends (one being a middle-aged male) who would say that minocycline has saved their lives. Best to you.
Your blog is encouraging.Personally not diagnosed yet,but kinda have lots of hints.Keep posting as sharing experience brings a lot of relief .Stay healthy!
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