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Everything posted by Angelique

  1. Hello all, I took the plunge and made an appointment with the Doctor who has subspecialty of Scleroderma which was listed here. I have to wait until February to see him. I decided that this is my body, I need to learn as much as possible about this disease. I really need to know we're heading in the right direction with all these meds. The specialists I see, causes me to question my treatment. Pulmonologist I saw last month, she came from John Hopkins and has worked with scleroderma patients previously. She said to me, that she has seen Cellcept used on those with lung involvement. Not for joint and muscle issues. She told me to take advantage of having a Doctor in the system who has scleroderma as his subspecialty. This prompted me to make the appointment. Saw the ophthalmologist, he told me exudate is from my diabetes. Although my retina scan was much better. Go figure? He was no help on what might help me get my contacts in daily since the tightness around my eyes has become more advanced. I know many of you are suffering more than I am. I'm just wondering if any of you had rapid changes or has this been a slow progress of the disease? I feel like so much is happening quickly in the past year of body changes. Raynauds, calcinosis, sclerodactyly, acid reflux, newly found telangiectasia. Along with the muscle and joint pain.
  2. Hello, I'm back again to update on the latest and perhaps a better definition of my diagnosis. My CT lung scan showed a dilated pulmonary artery. Off for an echocardiogram to see if I had pulmonary hypertension. Relieved the echocardiogram came out fine. Although my Rheumatologist wants me to see a pulmonologist anyway. My Rheumatologist is telling me that I have CREST. She increased my cellcept to 2000 mg which is slowly taking away my hyperpigmentation in blotches all over. My SED rate refuses to drop. Rheumatologist is telling me perhaps being on Cellcept longer will help with inflammation. She's telling me this is going to be a maintenance dose. Like for the rest of my life? Skin on my hands is still tight and shiny around the cuticles. Discovered I need to get educated on this myself in order to ask questions. Otherwise this doctor isn't terribly informative. Sure brings to mind that doctors are "practicing." Muscle aches are mildly returning as Sweet said they would. I'm going to try going back to see my trainer to work on stretching exercises. My hopes being that I don't return to the horrible muscle pain I experienced previously. As one of my client's daughter often tells me, getting sick isn't for sissies. I do have a question if anyone might know? My optometrist checked my eyes, he said I had exudate floating behind my retina. He wasn't sure if that was disease related? He's sending me to a retina specialist. So many variables in this illness. Ugh
  3. Hello Sweet, Thank you for your insight. I appreciate you reminding me that I need to be patient regarding a diagnosis. My Rheumatologist gave me information on Cellcept and Plaquenil. After a series of bloodwork, she preferred I take Cellcept. I will see her next month to further evaluate. I'm just thankful I'm tolerating this medication. All too often I have gastric upsets with so many medications. As for the hyperpigmentation, this made great strides during the period when I wasn't on any medication for this illness. Now I shouldn't complain since it's fairly even in color. Most people think I'm suddenly tanned. Although I would prefer the glow of a sunkist tan. I should just be content it's a fairly even color in most places. Thank you for the advice regarding the ring sizing. I've had a new ring sitting at the jeweler for 6 months waiting for sizing. I will see if they can do what you suggested. Appreciate all your input Sweet.
  4. Hello, I'm new to your site and done numerous searches to become more educated about scleroderma. Being newly diagnosed after nearly a year of discomfort, pain, several diagnoses and switching Rheumatologists here I am. Yes, i do have a few questions. My history is I'm a type 2 diabetic under control. I've been on prednisone on and off for nearly a year. I developed hyperpigmentation over 90% of my body. My current Rheumatologist said the hyperpigmentation on my hands is typical of scleroderma, but the rest of my body she is clueless why? I also developed Raynauds 3 months into this process. Presently I'm on 2.5 prednisone daily and I just started Cellcept 1000 mg daily. My questions: the Rheumatologist told me that I don't have swelling of my fingers, it's skin tightness from scleroderma. Yet I can't get my rings off like I did before this happened. So have any of you had swelling of your extremities ie hands and toes? I've also had bad muscle pain in my thighs and calves which seems to have subsided in the last month. Is this typical of scleroderma? My Rheumatologist is sending me for an ultrasound of my hands, anyone know why? Let me add that the doctor is new to me. Thus I didn't ask as many questions as I should have, partly because I was trying to absorb all the information she was telling me. She had resident in with her, so she was explaining to him her thoughts about my condition. She mentioned Crest etc. I would appreciate anything you can share.
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