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Post by jeffn on Sept 23, 2009 18:13:38 GMT -5
This one is AP related, I apologize in advance to non APers. I won't do this often but a thread on another board (to remain nameless) got me thinking.
For those of us on AP what "traditional" meds were you on previous to AP? What were your results? Good, bad, side effects,
etc.
Ah I just thought of how I can bring some of you non APers into this perhaps. I would also like to hear from people who have tried AP and are no longer on it. Why did to change back to "traditional" courses of treatment? Did you use AP in conjunction with other meds?
Not looking for reasons why people have or have not tried AP.Want to keep the politics out of this one if possible.
What are the collectives thoughts?
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Post by jeffn on Sept 23, 2009 18:23:44 GMT -5
I have not been on any meds other than mino for my SD so I can not contribute much to my own Troll  |
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Post by Cubby on Sept 23, 2009 19:51:16 GMT -5
I was on METHOTREXATE SHOTS! I can't remember the dosage but it was the max amount, (at least max for me).I built up by taking pills at first, in small doses, then increased dosage a little at a time. Eventually, the doctor put me on shots. When I took the pills and also when I did the shots, it was ONE TIME a week. The first month or so, I felt like I had more energy and less fatigue. That only lasted a short while. Even then, the scleroderma was "growing" up my arms. The Methotrexate was supposed to "stop the progression", but it didn't.
By the time I switched to a different doctor at a different hospital, (and started Photopheresis along with the AP), my arms were both hard as rocks from my fingertips to my shoulders. My face was hard and "puffy" looking. My mouth opening got smaller and I could no longer open it enough to floss my teeth. My legs and feet were swollen but never got as hard as my arms. My chest, and my back, down to about my waist, got pretty hard--not as hard as the arms but worse than the legs and feet. I was only on the Methotrexate about 7 or 8 months and the disease progressed as fast as described above! When I met the first doctor who put me on the Methotrexate, I only had it in my hands.
That's when and why I got a new doctor. I had already read Scammell's book by then too.
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Post by steve201 on Sept 23, 2009 21:28:08 GMT -5
Well....
I was on cytoxan ...300 mg's per day....then later ..maybe a few months after I started on cytoxan...Marsha found a study where this doc in boston was trying minocycline with the theory that SD is really an infection and the body needs help to stop it...
After about 6 mos of no progression..we as in the doc. marsha and I were discussing the study and agreed to put a test too it...I started mynocycline at about 200 mgs/day....I didn't really notice anything except my skin started getting a bit softer...not really noticable until one day....for some reason I was doing something out in the yard and took a deep breath...and noticed my breathing wasn't restricted.....I was amazed....I could breath...i still didn't have full volume but it was definitely easier to breath...where before it was like I had an ace bandage around my chest......I COULD ACTUALLY BREATH!!!....then I started noticing that my stomach problems were getting better..I could eat things that would normally kill me..ie ..spagetti..pizza...anything with tomatoes ......orange juice used to send me doubled over.....off gassing was a killer...I could peel paint....... the GI tract really settled down.....the only down fall is because of all the prednisone I was on...it destroyed my pancreas.......so..now I'm diabetic.....
other than that...AP Therapy is definitely something to concider...I was taking it by pill form...much less invasive than by IV....besides...IV's hurt like you wouldn't believe....
Steve
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Post by chosen on Oct 11, 2009 22:50:09 GMT -5
My Dr. said he had put 3 patients on AP and that it didn't work. Would love to know all the details since I believe there to be SO many factors to keep it from working. Also when and how did he decide it didn't work? Wonder if there will ever be some complete and honest answers to these questions. I keep thinking about Lorenzos oil. It had to be given at the right time. Or the movie Awakenings. There is just some piece of the puzzle missing. Just change my name from chosen to rambling- sorry.
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