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About Tara

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    Bronze Member

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    Northeast Ohio
  1. I didn't read all the responses, but my pregnancy caused my scleroderma. The doctors won't/can't confirm, but I know. My son was born in July 2005. I first went to my primary care physician with the initial complaints in Nov. 2005, but should've gone earlier. I was just attributing everything to being a new mom, tired, hormonal, etc. I was diagnosed with diffuse sclero in Feb. 2006.
  2. I'm sorry you're having so many issues right now. When I was first diagnosed, my dr. put me on Plaquenil. However, I had EVERY side effect listed in the pharmacy brochure and even missed some work because of it (I NEVER miss work). I think I was only on it for about 2 weeks when we stopped it and I started Cell Cept. I don't know if that would be a good med for your specific condition, but I haven't had any side effects from it and I started it in March. It's worth talking to your dr. about.
  3. I was diagnosed with diffuse sclero in Feb 2005. My local rheumatologist sent me to Dr. Medsger to confirm the diagnosis. My experience my be different than others, but I don't think the visit helped anything. His nurse Carol was very nice, etc. However, I found him to be anything but. I just think his bedside manner was a bit cold, especially in delivering the news to a 24 year old woman who just had a baby that she may not be alive in 5 years. Another thing neither my local rheumatologist nor I cared for is that he wanted to put me on D-penacillamine medication. After talking with my rheumatologist and doing my own research on the meds, we dedided that wasn't a good option. Now I'm on Cell Cept and doing great with no side effects from the meds. I did search out my own 3rd opinion from Dr. Kantor at Ohio State University. I found him to be much more personable and the visit was great. My rheumatologist has told me that Dr. Maureen Mayes at the University of TX is great, too. That might be closer for you. I also know that there are good Sclero doctors. in WA state, the Mayo Clinic, and at Northwestern Univ. Dr. Medsger is a specialist and knows his stuff, but there are other options to consider.
  4. I don't have any advice on the finger, but I'll tell you about my tattoos (only 2, both hidden). I was just diagnosed with Diffuse Scleroderma in February 2006 (most likely caused by my pregnancy--son was born July 2005). I got my first tattoo when I was 18 in June 1999. I also must say that when people find out that I have tattoos, they are completely surprised. I guess I don't come off as that type of person. Now a days, all types of people have tattoos, not just the stereotypical inked person. I recently got a second tattoo in March 2006 (1 month after diagnosis). I'm not sure if it depends on where the tattoo is, but mine is on my left lower back. I don't have any skin involvement in that area. I also had just started an immunosuppressant when I got it, too. I made sure they were licensed by the health department and questioned them like crazy about their practices-sterility, etc. I didn't have any problems, actually had a better experience than the one when I was 18. It healed up great, too. Ask your daughter what her reasons for getting a tattoo are. I wanted the second one because of my son. He was born in July and is a Cancer, so I got a cartoon-y crab. I also was very unsure about my future with sclero since my dr. told me a month earlier that I only had a 40% chance of being alive in 5 years. It was my way of dealing with the situation and not knowing if I'd see my son go to kindergarten. Maybe she has similar feelings/reasons? See if she has any other ideas to work through her feelings.
  5. There is actually a sclero PT guide written by a therapist at the Univ. of Pittsburgh that was recommended to me by Dr. Medsger. I think it's online, too. I got a copy for my PT that helped both of us. I don't think I can post the link here, but if you email me, I can send it to you. Tara
  6. I'm sorry you're having such a rough time. I've been on Cell Cept since March for diffuse scleroderma. My dr. said it could take up to 6 months to start to work or for me to notice a difference. Since I was diagnosed in January/February, I don't have much to compare it to, but I think you should give it more time to get in your system. Your skin problem could be getting worse b/c of the scleroderma and not because of the cell cept. For me, I think my progress has slowed a lot compared to what it was from November 2005-March 2006 before I started the med. Just these last few weeks, though I think it's started to worsen again. I have an appt. next week, so I'm going to ask about it then. Oh, is your dr. going to slowly up your dosage? I think I started at 250 mg. twice a day and now am at 1g twice a day. It took about 3 increases to get me here. Good luck! Tara
  7. At the risk of sounding stupid, I have some elbow issues. I am embarrassed to wear short sleeves now. My elbows look dirty no matter how much I scrub. I don't know if it's a permanent bruise or if the scleroderma has discolored them. They also are painful to the touch. I think I found something by Googling "Elbow tip pain" that convinced me I wasn't completely crazy. Does anyone else share these symptoms? Is there anything I can do for the discoloration? Thanks! Tara
  8. I looked up the form online for the disability placard, and I'm not sure Raynaud's applies in Ohio. Some of the things included on the form are not being able to walk 200 ft without stopping to rest, not being able to walk without assistance (i.e., using a brace or cane, etc.), not being able to walk due to arthritis or a neurological or orthopedic condition, or having a lung or cardiac limitation. I guess the only one close would be the arthritis, huh? I don't want to call my doctor to write a script if the DMV isn't going to accept it. The winters in Ohio are brutal even for a healthy person. I have to wear gloves and my office heater when it's 60 degrees outside. This will be my first winter with full blown Scleroderma/Raynaud's. I don't know how it'll be when it's 2 degrees outside.
  9. I'm on 2 g a day of Cell Cept (1g in AM and PM). I also take Procardia, Nexium, Capoten, Lipitor, and baby aspirin.
  10. Hello! I am 25 and have diffuse scleroderma, but thankfully no organ involvement yet. I was diagnosed Jan. 26 2006. Here are my meds (I take 10 pills a day): Cell Cept 2g per day Nexium (heartburn)--2 a day Baby Aspirin (circulation) Capoten (circulation) Procardia (circulation) Lipitor (circulation and anti-inflammatory) I started the Cell Cept in March and haven't had any problems with it. I was on Plaquenil from Jan. 6-March and had horrible side effects. I was so sick, I missed a few days of work and I never miss work. I had every side effect listed on the pharmacy brochure except for 1. I haven't been on Reglan for the sclero, but when I had my baby in July 2005, my lactation consultant suggested I take it to help increase my milk supply to breastfeed. My OB/GYN refused to give me more than a 2 week Rx because of the horrible side effects. I think I only took it for 4-5 days because in addition to having a newborn and having to feed my baby every 2 hours around the clock (ie-absolutely NO sleep for 8-9 days), I couldn't deal with how it made me feel. Good luck! Tara
  11. I'll bring some caramel apples. I've been in the mood for them lately. Must be the season. I really like this new board!
  12. All of the digital pics I have saved on my computer are around 300 kb. Is there a way to shrink them so I can post here? :huh: Thanks!
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