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Everything posted by jefa

  1. jefa


    I am glad to hear of your good results with Cellcept, Alice. I see this is your first post and I'd like to welcome you to the forum. I look forward to hearing more of your experience. Anderson, I'd also like to welcome you to the forums and hope you find some relief soon, so you can relax and enjoy that little one, hard enough work under the best of circumstances. Do you have some help?
  2. Hi, Lisa Here are links to the other two books http://www.sclero.org/scleroderma/books/voices/vol-2/a-to-z.html http://www.sclero.org/scleroderma/books/voices/vol-3/a-to-z.html Talk to Shelley directly about ways you can work around Google's shipping restriction to the US. I highly recommend the series.
  3. jefa

    Norvasc for Raynaud's

    I am not sure whether it needs to be weaned when prescribed for Raynaud's, though it should be weaned when it is taken for high blood pressure as noted in this MedicineNet article on amlodipine-oral (Norvasc): Do not stop taking this medication without consulting your doctor. Your chest pain may worsen if the drug is abruptly stopped. Your dose may need to be gradually decreased. Just give your doctor a call to be sure.
  4. jefa


    Hello, Cher I believe others statements about Plaquenil are correct. As Jeannie has suggested, it is important to talk to your doctors about this. I am not a doctor but a bit of searching turned up the condition of angioedema which does include swelling of the eyes, throat and hands. Here is an article from the MedlinePlus Medical Encyclopedia on Angioedema. One of the possible causes is a reaction to ACE inhibitors. Are you taking any (i.e. for blood pressure)? It is often difficult to get all your doctors on the same page when you are seeing several specialists. It seems like a discussion with your primary doctor might be in order to gain the appropriate perspective. Please let us know what you find out.
  5. While still recovering from a hysterectomy in December of 2002, I took an exhausting plane trip to visit my family in California. While there, I got a nasty upper respiratory viral infection from my young grandson. It kept me down for weeks and it was then I started having symptoms like rheumatoid arthritis. I had the typical scleroderma sausage fingers, though that word didn't come up at the time. Like Amanda says, I always felt like the trauma of the surgery followed by the virus while I was still down (in combination with going back to work to soon and the jetlag from the trip) made my autoimmune responses kick in with a vengeance.
  6. jefa

    I'm back!

    Oh, it is SO good to see you back, Lisa (and your hunky husband, as well). Much love and as many hugs as you can handle, sweetie. :D
  7. jefa

    Why not Ibuprofen?

    Hello, Pokey In your post you mention that someone said a pulmonologist said -- was this your sister's pulmonologist? It is important that she discuss any possible drug use with her own doctors who will have the correct information at hand. Ibuprofen is one NSAID (non-steroidal ant-inflammatory drug) prescribed to reduce inflammation and sold over the counter under several brand names (including Advil and Motrin). Acetaminophen (Tylenol is one over the counter brand name) is another type of pain reliever which works in a different way. Our page on NSAIDS gives an overview of their use and possible side effects and warnings. This page lists a warning about Acetaminophen and asthma: Acetaminophen and the Risk of Asthma. A growing body of multidisciplinary evidence backed by biochemical explanations suggests that frequent acetaminophen use may also have a negative impact on lung function. Chest. 2005;127:604-612. (Also see: Asthma) It is important to pay attention to the daily limits listed on acetaminophen labels as excessive use can cause other problems such as liver damage, especially when alcohol is also consumed. I am not a doctor, but my doctor has prescribed the use of another NSAID in conjunction with occasional use of acetaminophen (known as paracetamol in the UK) for other kinds of pain such as headache. As I mentioned before, it is important that your sister follow her own doctor's instructions regarding all drugs taken and to keep in mind that many over the counter preparations may contain ibuprofen or acetiminophen/paracetamol, so it is easy to take more than you should if you are not careful to read labels.
  8. I am so happy you have joined our team and I look forward to working with you in chat and on the forums.
  9. Terrific news! Jeannie, I am so happy you have joined our team and I look forward to working with you.
  10. jefa

    Australia Day

    Happy Birthday, Helen, and happy Australia Day to all of you lovely folks down under.
  11. jefa

    Hard Boiled Eggs

    Welcome to the forums, IcyGrace (brrr!) and Pokey. I look forward to getting to know you better.
  12. Hello from another old lady, old lady. Let me join in welcoming you to the forums. The link Shelley provided contains a wealth of information. If you need help finding anything specific, let us know or use the Search Forum link in the purple tool bar to find other discussions on the topic.
  13. Hello, Eos. Let me add my welcome to the forums. I think it is very easy to get caught up in all of this and fear for every new symptom and its possible outcomes. The best thing to do is try to relax as stressing is certainly not good for us -- it can bring about Raynaud's attacks, among other things. The way things play out is different for each one of us. Jeannie, after reading your rheumatologist's comment about using heavier balms, I tried some all purpose salve I have been using as a lip balm on some itchy spots on my hand and it worked quite well where lotions hadn't quite done the trick. Thanks.
  14. jefa

    New Here, need some help :)

    Welcome, Jen. I am pleased that you have found us and hope the forum will prove to be as much of a boon to you as it has been to each of us. Also glad you had a chance to talk to Shelley. She is a beautiful person in every sense of the word.
  15. jefa

    New to Site, New to Diagnosis

    Warm hugs and welcome to Stef and Honey. Stef you asked about books to read. I recommend the Voices of Scleroderma series. Each of the three volumes opens with a section devoted to professional scleroderma experts from around the world and also includes over 100 patient, caregiver and survivor stories from this sclero.org website. You can purchase the books through our scleroshop.
  16. jefa

    Systemic Sclerosis

    Hello, Evelyn. Let me welcome you to the ISN Sclero Forums. I hope you will find us a friendly and helpful group. You will certainly find a ton of information about all aspects of the disease. I am also from the UK (Scotland) and we have several other British members scattered around. Have you seen the scleroderma specialists at the Royal Free Hospital in London? I see that you are already getting iloprost (I assume) infusions for assistance with your Raynaud's. Keeping it under control is one of the most important things, especially at this time of year. We have a live chat on two days. You can find the information in this link. Wednesday at 7pm in the UK is when many of the British members tend to show up together. I look forward to seeing you there if you can make it.
  17. jefa

    Meatball soup

    This looks very much like a soup an old friend of the family calls Italian Wedding Soup. She always used spinach with the baby shells. Delish.
  18. Janey and Jeannie have both given you good links. I have nothing to add except for warm hugs and a big welcome to the forums. I look forward to getting to know you better.
  19. jefa

    Started cellcept

    Hi, Ardis and Welcome. So glad you found us here at the ISN Sclero Forums. I have had no experience at all with Cellcept, but you can always use the search forum button above to find previous discussions. Search results for Cellcept (by topic).
  20. jefa

    Natural methods to relieve pain

    Welcome to the Sclero Forums, urangel. Many of us are with you in the S.S. Waiting for a Diagnosis boat. I believe the average time for receiving a diagnosis has been reported on the board as six years for a woman. By those statistics, I should be getting mine in 2009 - I have something to look forward to then. :D The important thing is to make sure that your symptoms are being treated as they occur, with or without a diagnosis.
  21. jefa

    New to board; have questions

    Hello, Mark. Let me join Sweet and Janey in welcomimg you to the ISN Sclero Forums. We have quite a few scleroderma partners on board, so you should be able to gain some perspective by reading posts. I presume that your wife is seeing a scleroderma specialist or a rheumatologist who is familiar with scleroderma. I would suggest that she discusses with her doctor the various medications that can improve the ulcer situation by reducing the Raynaud's attacks. You can read more about them on our Raynaud's Treatments: Medications page. And please invite your wife to join us, too.
  22. jefa

    Pneumonia again

    Hugs to both of you, Margaret. It sounds like the right things are being done, so I will keep warm thoughts open for him -- and for you.
  23. jefa

    Virtual New Years Party in Progress!

    Shelley, what a great idea - the nice thing about going to someone else's place is not having to clean up the mess. That is my hostess gift to you: a virtual maid service to come in and clear the rubble afterwards. I have brought cheese and crackers - easy to prepare and the cheese is good for dreams, they say. As for entertainment, you can all have a chuckle at my hippy rags. That's about all I am good for tonight. By the way, it's 6 1/2 hours till midnight here in Scotland where New Year's Eve is known as hogmanay. We Scots celebrate the new year so well we get two days off afterwards. In just about an hour, I will open up the chat room. Hopefully some of you will find us there. In fact, feel free all evening to gather as you show up to the big virtual party.
  24. jefa

    Have a wonderful holiday

    Peace and happiness to you all.
  25. Excellent advice. I had a long talk with my family doctor this morning about some of these things.