October 20, 2008 at 4:21 pm #301168
Pre-mino history. Had wisdom teeth out in 85 and had a bad reaction to a medication after surgery. Within 6 months I was having pain in wrists and swollen sausage like fingers. 86 was diagnosed with Scleroderma by ANA. In my teen years and early twenties I tried penicillamin, methotrexate and then photopheresis. Took steroids in college to stop progression in lungs, that seemed to work. Stopped working in 2003. Toes and fingers were very deformed. I had lost all knuckles and fingers were dislocated. 05 I had all toes straightened (afterwards I could wear non-ortho shoes). 07 I had all knuckles replaced by a hand surgeon who does great work for Scleroderma patients. It is a whole new world having knuckles again.
:):) 1.20.08 started mino 50×2 daily. Had major facial hives, a few big ones on stomach and thigh.
:D:D 3.20.08 changed to 75×2 daily. Still hives. But stomach started feeling better (stopped prevacid) and finger tips less sore. Stopped Procardia. SKIN between thumbs and index finger seemed to be getting wrinkles.
;);) 4.20.08 changed to 100×2 daily. Feel blah, woosey, sick, eyes bothering me. Ok only lasted 5 days on that then went back to 75×2 daily.
:dude: 6.1.08 Some superficial calcium deposits in forearms are getting better. Stomach and hips getting more meat on them. Had to up bra size from 34 to 36. But not the cups:?. I have always been a very skinny person.
:)9.11.08 Met Dr. T in Boston. Said I could keep the 75×2 daily dose and that I would be on drug for probably 10-20 years. Could not stop even if I felt better. Have to go back in 1 year. My gums have been feeling much better also more energy.
:dude: 10.1.08 More wrinkles on hands. Skin is feeling softer to the touch. Have gained 7 lbs since I started mino. Arms are stronger-see muscle definition. But, hands not really getting any fine motor skills back. But skin is nicer.
😛 10.22.08 Flexibility in hamstrings has improved a little. Skin around finger nails looking better. SKIN on back of hands plumper. Still occasionally get some facial hives.November 12, 2008 at 3:11 pm #319429
:)11.12.08 In the past month I have been getting lots of feedback from people. Some know I am taking mino and others don't. I have heard directly or my friends and family have heard from others who saw me. ** I am moving better, I seem to have more energy, my face isn't so tight, my hands don't look as shiny, I seem happier, I look good. Geee I am getting excited.
I guess the only draw back to having more energy is that I want to do more. I have been walking the neighborhood several times per week, but have slowed that down because the bottom of my feet hurt. I don't have much padding and had joint damage in toes in 1998-02. Toes surgically straightened in 05.
Oh, one more thing. MY SED rate (blood work) has been high for many years (highest I saw in my collection of blood work is 65). The year before mino it settled in the 20's. SInce I started mino (score 9) earlier this year and then recently (8). WOW! I can't wait for January blood work to see if down even more.
I also am still noticing smaller calcium deposits healing. The large ones I have through out my body hurt a little less. I think mainly because natural soft tissue is returning to my body. I need padding, so I am very happy to see that. MY butt is filling out–awesome. 😎January 21, 2009 at 10:28 pm #319430
Hey I've been on Mino 1 year. I actually have been able to take the 100mg lately. I guess my body had to built up to it. I take 100mg in am and 75mg pm. I am feeling pretty good, but having to keep really warm with all the cold weather. I tried ridding my bike the other day. I use to get terrible pain with calcium deposits and they would get inflamed and grow. However, it seemed like it went pretty well. Had some delayed hip pain, but not like I had before. I will try it again when it warms up.
My skin continues to loosen. I have not gained anymore weight. My feet are bothering me more. I know my skin is softer on top and bottom of feet. I can actually pinch skin on bottom. But, I need padding. I still feel like I am walking on my bones. I wonder if the softer skin is making me feel the bones more?
I still notice superficial deposits getting smaller. Yeah! However, I have so many more and deeper ones to go. So, I'll just keep chugging along.
I hope everyone has a great new year. Mary Beth 😉June 21, 2009 at 3:24 am #319431
:dude: Well, I guess I have been a busy person. I am still on AP. Usually taking 75 x2 daily. Sometimes I do 100mg in am and then the 75 in the pm. My husband and I went to china last month and received our daughter we have been waiting for, for 3 years. She is wonderful. (20 mnths old). WOW suddenly having a toddler is weird. But, I am doing surprising well. I can pick her up. Which I thought I would struggle with(since my hands are really limited).
My calcium deposits are still not bothering me as much, my skin is dark in some areas(side effect of med maybe). My legs have been itchy lately, but all in all I feel good. My stomach is still doing well. I just wish I was more flexible and my cal. deposits all went away. I am still hoping. Best regards, MBFebruary 27, 2010 at 7:40 pm #319432
😕 2.27.10 Had increased to 100×2 daily of minocycline. We adopted a child 9 months ago, so I have been busy. Probably 5 months ago, I felt my skin was still softening but calcium deposits were getting worse. Had to go see Dr. T in Boston and he decided to switch me to Doxy 100mg x2 daily. Also, I must take my Mobic everyday (I have been skipping because I dont have a lot of joint pain). But, he thinks it will help w/ calcium deposit pain. DOxy seems to be ok w/ my stomach. I still don't eat 3 hours around pill. Which is best for full absorption.
I still am stronger than I was a few years ago. I smile nicer in my photos(skin more relaxed). Gums feel a lot better. Just need to get control of calcium deposit growth and pain.
Best to everyone. MB 😎March 5, 2012 at 10:56 pm #319433
WOW, I have not updated in a year. Very busy raising a 4 year old. Still on Mino 100×2 daily. Still have tons of calcium deposits, some are starting to bubble up towards surface. I hope they come out soon. I don’t think I have any new ones. I have gained 15 lbs and am feeling pretty good. I have not found a replacement doctor for the retired Dr. T in Boston. Best to all. MB 😎August 17, 2013 at 11:42 pm #319434
I guess I am a once a year poster still. Still on mino, I guess I hv had scleroderma for 25 years now. Dr. T that I was seeing in Boston retired and now I go to Dr. HW in NY. He looked at me and said I can pinch skin everywhere. He wanted to do lots of blood tests. My titer is high in lupus category and negative in scleroderma. HMMM? Im sure I was tested for Lupus many years ago but not in the last 10. He said I have MCTD(mixed connective) Scleroderma/lupus/RA. SO I had my heart checked and lungs. Heart fine. Lungs has possible issues, but I wonder if old scarring from 90″s. I use to not be able to climb a flight of stairs but now, I can do many. I took steroids in 90’s and helped my lungs. So I will see a lung specialist soon.
I still am doing good on mino. Skin on face soft, i am stronger, keeping weight on. Just hate the black spots all over my legs from mino. I do see that mino has helped shrink my calcium deposits. But, I think it will still take years for the concrete ones. None have come out of skin, they are just getting smaller. No new ones in 4 years now. 🙂
I am very busy with an almost 6 year old. Whew a lot of work, but love it. Have been on disability for like 11 years now. Even with feeling better, my hands and feet are so limited, could never work. I am still very happy with the knuckle implants I got in 08. They have done very, very well. Well, Best to all. Regards, Mary Beth
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