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oneuncoolmom

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About oneuncoolmom

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  1. Does anyone have CREST along with Morphea?

    Hi Shelley and Everyone, I know, Shelley, that you are a scleroderma encyclopedia, but if I understand your last post correctly, I believe you said that morphea is a permanent condition. I have read that it can go away after a couple of years. I am one of those very rare birds that had morphea and also has CREST. My morphea was confirmed by biopsy and it lasted for about 3 years. It was a large patch on the skin of my stomach. It faded about one year ago. I also have CREST, confirmed by the presence of anti-centromere antibodies and anti-mitochondrial antibodies, Raynaud's, telangectasias, sclerodactaly, and calcinoses, among other things. I just wish I knew what is going on internally or on a microscopic level that causes some people to have both conditions when it is so unusual to have both. Thank you to any of you who have any thoughts. One uncool mom
  2. Cardizem/Diltiazem dosage

    Hi Cardizem takers, My rheumatologist started me on 120 mg of Cardizem/Diltiazem about a month ago, and when that didn't work, she raised me to 180 mg. She said that would probably be the highest dose of that med that she could give me because my blood pressure is slightly low. Well, the 180 mg helps a little, but I still get attacks, and they take a while to go away even when I warm my hands. So......is anyone taking this drug at these dosages, and, if so, what kind of relief, if any, are you getting? Has anyone taken this drug and changed to another because Cardizem didn't work? Hoping to hear others' experiences because I'm wondering if this annoying Raynaud's can be brought under control. Hope everyone is doing well and looking forward to warm hands in the summer months, Margo One uncool mom
  3. Morphea

    Hi Truman, It's so good to see that you are back on the Forums. I've been wondering when you would be able to get back on!! I think you've stumbled upon a morphea cure that the doctors don't know about. I wish you could figure out what exactly did it. In answer to Celia's question about whether you have Limited Sclero/CREST or Morphea, I believe you & I are both very unusual in that we have BOTH. So........it would be very cool to know how to get rid of the morphea, and I wish we could find out what it is that makes us have the rare situation of having both conditions. All of the research says that both conditions RARELY occur together. Oh, well.....I guess we'll have to wait for medical research to advance. Anyway, Linda, keep getting better. All the best, Margo (One uncool mom)
  4. Cuticles

    Hi Sharon, The skin between my cuticles and first knuckles is also shiny, though I think mine is slightly thicker than the skin above the first knuckle. The other difference is that my cuticles are very thick &, I might add, ugly. I have a form of CREST (systemic sclerosis). Do you have a diagnosis? My rheumatologist indicated that the ugly, thick cuticles are from having Raynaud's for about 18 years. So, does that mean that you don't have Raynauds, or that you've had it for a short time? If I'm not mistaken, I think the shiny skin is from the sclerosis, but it sounds interesting that your skin & cuticles aren't thicker. I will be interested to hear what, if any, other symptoms you have. Best to you, Margo
  5. Calcium Channel Blockers

    Dear Alice, I agree with Barefut and Jefa that I've never heard that calcium channel blockers were used for calcinosis. Do you also have bad Raynauds which may be the reason you were given the Cardizem? Do you know what dosage you were given? I'm wondering because I began 120 mg per day a week ago and don't have any side effects, but I am wondering if I'll have side effects if my rheumatologist raises the dosage. I'm concerned that she'll want to raise the dosage because the 120 mg is only helping a little. Thanks & Good Luck, Margo
  6. Calcium Channel blockers/Nifedipine/Cardizem

    Hi Mary, Omaeva and Judith, Thank you all for sharing your experiences. This condition is so varied in the way it affects people. Mary, your insights about Viagra sound very interesting and I will probably ask my rheumatologist's opinion about using it. I feel very blessed to have not had any ulcers so far -- just very frequent Raynaud's attacks even though I live in southern California. Actually, I don't know about your tolerances for temperature, but I get Raynaud's attacks even when the temperature is up to about 72 degrees. I certainly try to keep warm all the time, but I will have to wear gloves much of the time if my doctor and I can't find a drug that reduces the frequency and duration of the attacks. Do any of you wear gloves most of the time? Anybody else have any info? Hope all of you are doing well and enjoying the Memorial Day weekend, and, again, thank you for taking the time to respond. Margo
  7. Calcium Channel blockers/Nifedipine/Cardizem

    Hi Omaeva, I'm glad to hear that you've had improvement, but I guess it could take even longer than 2 weeks to see results. Thank you so much for sharing your experience. Margo
  8. I started Cardizem 2 days ago for my Raynaud's and, so far, I haven't seen an improvement. I read that these meds can take up to 2 weeks to lower blood pressure, but I couldn't find any info about whether it also takes 2 weeks to reduce Raynaud's symptoms? Can any of you report your experience with any of these meds? My doctor didn't say how long it would take until it "kicks in". Thank you so much for your help. Margo
  9. Raynaud's

    Does anybody know if the calcium channel blockers work immediately, or do you have to give them a couple of weeks to see fewer and less severe Raynaud's attacks? Thanks, Margo
  10. Nail fold - Raynaud's- what does it look like?

    Ditto, ditto, everybody. I have had, GORGEOUS thick, yellow cuticles with brown dots (blood spots) and little red dots on the nailfold for somewhere between 7 to 10 years, not knowing that I had Sclero. My regular doctor didn't know what caused this condition even though she knew I had Raynaud's. It wasn't until I went to a dermatologist last month that I was finally diagnosed with Sclero. Now that I've seen a rheumatologist, who said that she didn't need to do the capillary microscopy because she could see enough evidence that I have Sclero, do any of you know if the microscopic appearance of the nailfold capillaries give any indication of what might be going on in any of our internal organs? Curiously, Margo
  11. Tonight's Chat - Fatigue

    Hi Everyone, With some of us involved in Mother''s Day dinners, I wondered if anyone could summarize tonight's Chatroom discussion about fatigue for those of us who missed it. In particular, I was wondering if anyone discussed whether or not fatigue is always associated with internal organ involvement, of if it can occur without a definite cause. Do some people never experience fatigue? Any info would be of help. I'm new to all of this. Thank you so much and Best Wishes to everyone. Margo
  12. Systemic Sclerosis and Morphea

    Hi Tru, It sounds like you've been through a lot---you're a real trooper. I'm so sorry to hear about your losing your toe. I hope you're able to walk without difficulty. The things you told me bring up some new questions, if you don't mind. 1. I have pretty frequent heartburn and was wondering if the doctor made you have an endoscopy or any other test or just put you on one of the heartburn medications? If you are on a medication, has it stopped the heartburn? 2. Do you have fatigue? 3. Are you taking any other medications, like for the Raynaud's, and if so are they helping? 4. Have you had an echocardiogram or a pulmonary function test? My rheumatologist says I'll have to have those tests annually. 5. Are you sure the hives are from the CREST or could they be a reaction to any medications you are taking? I've never heard of hives being associated with CREST, but then I'm new to all this. I hope your skin graft goes well. Talk to you soon, and again, thank you for your patience in answering my numerous questions, Margo
  13. Systemic Sclerosis and Morphea

    Hi Pamela, All of you have already been of great help, and I'm feeling a lot better emotionally when I see how may people are coping so well. I will comb this site more carefully to find more answers and information. Hope you are having a nice Sunday and Mother's Day (if applicable). Margo
  14. Systemic Sclerosis and Morphea

    Hi Tru, How interesting---our histories sound somewhat similar. Did you actually have a biopsy of your patch that showed it was morphea? Also, what were your older CREST signs that came and went and what were the newer signs that more recently caused you to be officially labelled as true CREST? I hope you don't mind me asking you so many questions, but like most of us, I don't know anyone who has been through this. If it's too much for you to answer all these, just please say so. Do you mind saying how old you are? I'm also wondering if any of your CREST symptoms are really bad or just a bother. Do you have fatigue? Hope all is well and I hope to hear from you soon. Thank you so much, Margo
  15. ANA

    Hi Cordy, My rheumatologist may be wrong, but she said that the level of ANA does not have a correlation to the severity of your condition. Hope this helps & GOOD LUCK, Margo
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