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Posts posted by jefa

  1. My first symptoms showed up in 2003 and I still don't have a definitive diagnosis of scleroderma. I have inflammatory polyarthritis, osteoarthritis, secondary Raynaud's, GERD, hiatus hernia, and 'possible scleroderma' with skin involvement on the back of my calves, and starting on hands and face. I have had elevated CRP and ESR throughout, but negative RF and ANA.

  2. Yes, Wendy. My nose and ears get very cold. In fact I have a growth or something on the tip of my nose which I wonder if it is caused by Raynaud's. My general practitioner is referring me to a dermatologist to check it out.


    Hi Afii. Plendil is a calcium channel blocker. Sorry to hear it is giving you headaches. Have you shared that with your doctor? Nice to hear from you again.


    You are right, Sheryl -- it is best to warm them gradually in warm water.

  3. It does sound very painful. Glad you were able to make it to urgent care. I hope the pred boost works for you - it may take a bit of time to start working.


    Good luck with your new charge. Is there still time to reconsider? :rolleyes:

  4. Welcome to the ISN Sclero Forums, kuntrybumzz. I think you will agree after reading and posting for awhile that you have found a great place to share and find information regarding your various problems. I feel your frustration with the rheumatologist who can't remember what she told you from one visit to the next, but it may be that she took on board your question from the first instance and had reconsidered by the second time. At least you are getting monthly visits. Most of us have to wait longer. Mine actually said the same thing the first time I saw him, that it couldn't possibly be scleroderma, but even with negative ANA he is now giving it consideration. As for limits on how long you might live, there are MANY members in the forum who continue to lead full lives with the disease and a good many have been diagnosed for much longer than that. With proper treatment and a healthy lifestyle, things are looking up for all of us.

  5. Hi, Barefut


    Oh, it's all of those things and others you haven't mentioned, I am sure. We all have days like that at one time or another, but as you have already been there before several times, you are even more painfully aware. I talked to a few people who have taken fluoextine (Prozac) before I took my doctor's advice to start it. After some discussion, it came up that the doses were quite varied, depending on the reason for giving it. I take only 20mg a day and it helps quite a lot. It works well if your depression is related to the amount of available serotonin. As you suggest, your problem may be more anxiety related than depression, in which case the treatment possibilities would be different. Do you really want to wait till August? I would think your primary care physician would be the person to see, sooner, rather than later.


    As for the treadmill, it is doing no good in the box - get it out, my friend! :)

  6. Glad to hear you are watching it. My husband has hypertension issues, so we also cook everything fresh and watch salt. I don't add salt to anything. Since I have limited his salt intake, he is beginning to 'discover' other tastes. He is particularly enjoying garlic, pepper and chilies.

  7. Hi, Kamlesh. I have no personal experience with Cellcept, but from a quick internet search on Cellcept, I see that nosebleeds are a side effect for which you should contact your doctor right away. He or she will be able to give you the best advice on this.

  8. Hi, Joe. Fortunately, I have had no experience with digital ulcers, though I am sure those who have will step up and share their experiences Here are a couple of links I posted in another topic on a similar subject"

    "As nan said, you may be describing a Digital Ulcer. Do you have problems with cold hands and/or feet that sometimes change color? Another ISN link to explore is the one on Raynaud's phenomenon. Digital ulcers are more likely to occur in conjunction with Raynaud's (pronounced RAY-nose) attacks and are caused by lack of oxygen to skin cells."

  9. Welcome, Reese. I am so glad you found us at the Sclero Forums. I am sorry to hear about your diagnosis of MCTD. It sounds you have found a competent team of doctors and I wish you much luck with your pregnancy under these circumstances. This has been a great source of information and support for many of us. We look forward to hearing more about your treatments as they progress.

  10. Welcome to the ISN Sclero Forums, Rachelle. I am glad you found us and started posting right away, but sorry that you may have scleroderma. As nan said, you may be describing a Digital Ulcer. Do you have problems with cold hands and/or feet that sometimes change color? Another ISN link to explore is the one on Raynaud's phenomenon. Digital ulcers are more likely to occur in conjunction with Raynaud's (pronounced RAY-nose) attacks and are caused by lack of oxygen to skin cells. Seeing your doctor is a good idea, but try to read as much as you can so you can go in with the right questions.

    Please feel free to post in the Getting to Know you thread at the top of the page. It is good reading, too.

  11. Jennifer, I take fluoxetine, an SSRI. Selective serotonin reuptake inhibitors (SSRIs) have fewer side effects than some of the older antidepressants. SSRIs are not addictive, though there are usually temporary withdrawal effects, so they need to be stopped gradually. For two years I resisted taking anything for depression. I thought at first the doctor was saying that part of my problem was mental. I said if I were not in pain, I would not be depressed. Then I started breaking into tears quite frequently. My doctor convinced me to try the SSRI and I have never regretted it for a moment -- I feel so much better than before. I take at dinner time so that any side effects like drowsiness fall at bedtime anyway. At one point my doctor had tried me on amitriptyline for insomnia (not for depression) and I couldn't tolerate the side effects at all. Each person is different.


    As an added benefit, this is found on ISN's Raynaud's page:


    Raynaud's Phenomenon and Serotonin Reuptake Inhibitors The antiplatelet and endothelium-protective properties of SSRI (selective serotonin reuptake inhibitors) may represent an attractive additional advantage in patients with depression and scleroderma. Patients who have scleroderma should be screened for depression, and SSRI might be considered when indicated.

  12. Janey's right - go do something nice for yourself. As for the insensitives, why not get a bumper sticker or make a sign for your dashboard to go next to your placard - maybe something like, MY DISABILITY IS INVISIBLE, YOUR INSENSITIVITY IS NOT. Just kidding about the second part, but there are lots of goodies out there to enlighten folks. Google "Invisible Disability". The Wikipedia entry has several good links in it. Hugs.

  13. Hi, Susie


    I am so sorry to hear your leg pain is giving you so much trouble for the last three weeks. Did your bruises occur without apparent trauma? Have you discussed this with your doctor? Some of the other forum members may have similar experiences and will hopefully share what they know with you, but this sounds like something you should be talking to your doctor about, soon.

  14. Good question, whirlway. I have had no personal experience with them, but you can read more at this link (found on our Autoantibodies in Scleroderma page):


    Autoimmune Disease? Get Paid for Your Antibodies!


    "If you have been diagnosed with and are being treated for any autoimmune disease, you may be eligible to receive up to $500 per plasma donation, as long as your antibody levels are high. For you.S. residents who weigh at least 110 lbs and are at least 18 years of age. Access Biologicals. Posted 06-12-07"

  15. Ah, peanut. I feel for you and hope the new medication works. I know that many of us have a long list of prescription drugs from our various medical specialists. I don't have as many as you, but I have put all mine on a chart with the side effects, interactions and contraindications listed next to them. Seeing them all together can be a bit daunting, since a lot of the possible side effects are the same as the symptoms they are being prescribed for. I worry that the specialists won't consider the effects of what one of their peers may have prescribed for another symptom.

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