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Posts posted by jefa

  1. It is an interesting dilemma, smac. I am not a doctor and can't really advise you on which if any NSAID you should take, but meloxicam (the generic form of Mobic) is one of the ones my rheumatologist recommended. I used to take Celebrex and I had no problems at all with it, but my doctors stopped prescribing it because of the risk of heart problems. I understand meloxicam also has some of these risks. I am now taking etalodac (Lodine SR) which acts in a similar way to Celebrex in that it is a COX-2 inhibitor. COX-2 is the form of cyclo-oxygenase which produces the prostaglandins that cause inflammation. COX-1 does not produce inflammatory prostaglandins, but does produce others that have useful effects, including some that are involved in maintaining a healthy stomach and intestinal lining. Most of the NSAIDs inhibit the production of both COX-1 and COX-2. Meloxicam does come in a suppository form which might lessen the risk of stomach bleeding. You are right in discussing the options with your doctors before making a decision.

  2. I have split this topic because the original is a couple of years old. The questions asked in it are still relevant:


    How long have you been diagnosed?

    Do you feel your disease is currently progressing?

    Do you feel better now that you are on meds?

    Do you feel you have it under control?

    What are your main symptoms now?

    What were your main symptoms at time of diagnosis?

  3. Hi, Maria. Welcome to the ISN Sclero Forums. I am sorry to hear of your problems with muscle twitching. I do not have the problem myself, but I am sure others will share their own experiences. In the meantime, you may want to have a look at our medical pages, particularly the one on Musculoskeletal Involvement.


    We have another member from Finland, a lovely young lady called epasen, who will make you feel less alone, as will everyone.

  4. At my old workplace someone put a bookcase in the cafeteria for people to bring their discarded reading. The idea was that you could leave some you had read and take home some you hadn't. Pretty soon the readers caught up, so that the supply was outgrowing the case. Then we started giving the books to a local hospital.

  5. Hi, bookworm and Snowbird

    Regarding the manuka honey, our page on Digital (Finger Ulcers) gives us the following:

    NZ manuka honey wound dressing wins approval from US authority. Bee products company Comvita says its patented "advanced wound care dressing" has become the first using manuka honey for wounds and burns to receive marketing clearance from the US Food and Drug Administration. Wound-care products using the honey have become increasingly valuable, as they have also been effective against some antibiotic-resistant strains of bacteria. The New Zealand Herald. 07/25/07.

  6. Hi, Emmi. So glad to learn that you have finally beat that nasty bronchitis from the mould. I was a bit concerned about that. It sounds like your summer has been quite an adventure. Do keep us posted when finally see your doctors again. Have you tried a foam pad on top of your mattress to help cushion your ribs? I look forward to seeing you in chat again one of these days. :D

  7. Hi, Carol. I dont think I have had a chance to welcome you to the ISN Forums - glad to see you are finding your way around OK. I have had a couple of doctors who upset me over the years, and I try to give them the benefit of the doubt - once. You never quite know what went on before your arrival to prompt such a response. Still, there is no reason for a medical professional to behave that way. I think I would look for a different doctor. My current general practioner was a bit rude to me on our first meeting, so much so that I avoided him for months. I saw others for awhile, then got him again unavoidably at one point and he was fine. He has become my rock and the one person I can always count on to work with me.

  8. Hello, Judy and welcome to the ISN Sclero Forums. Sounds like you have had quite a go of things. Thank you for filling us in your troubles. I am sure you will find that the forum is a great place for information and support. Our collection of medical pages presents a huge amount of reliable information.


    I don't personally have any experience on Barrett's Esophogaus but there are a couple of forum members who do. I am sure they will share their experiences when they read your post. In the meantime, there are several articles and patient stories dealing with Barrett's on our Esophageal (Throat) Involvement page. Hugs to you and again, welcome.

  9. Welcome to the Forums, healthseeker. I am not a doctor, nor do I have any personal knowledge on immunosuppressants, but here is our page on Immunosuppressants and the articles on Imuran which may have some answers for you:

    Azathioprine (Imuran). Patient Education. American College of Rheumatology.

    A randomized unblinded trial of cyclophosphamide CYC) versus azathioprine (AZ) in the treatment of systemic sclerosis.After treatment there was a statistically significant improvement in the modified Rodnan skin score, attack frequency of Raynaud's phenomenon, and erythrocyte sedimentation rate (ESR) in the CYC-group, but not in the AZ-group. PubMed. Clin Rheumatol. 2006 Mar;25(2):205-12. Epub 2005 Oct 14.

  10. Hi, Razz


    You can archive your messages by selecting archive messages on the left side. I have found the easiest choice is to save them in HTML mode, as you can then read them easily. It will save all the messages you have selected to one file which will be sent to your email address. It will ask you if you want to delete them at the same time. I recommend you don't do this until you are comfortable that you have done it correctly. You can save the sent files and the received files separately. Let me know how it works out.

  11. Hi, Sharon. I am not a doctor, but I am taking Plaquenil. I have been told by my rheumatologist (and also by several people on the site who are taking it) that it takes up to 6 months before you will see any improvement from Plaquenil. I do think my fatigue is starting to lessen a bit and I am just about to come up on the six month mark. Have you seen a rheumatologist?

  12. Hi, Gina, and welcome to the ISN Sclero Forums. As you are starting to learn, we have several forum members from Australia who are familiar with the Australian health system and its idiosyncracies. I understand your frustration with trying to find a diagnosis, but your statement "I am not going back to doctors and I will deal with it the best way I can." worries me. You don't mention what kind of tablet your doctors gave you that made you scattery. I can't imagine any medication for GERD which would be addictive. As for anti-inflammatories, my doctors prescribed a proton pump inhibitor (omeprazole) along with an anti-inflammatory to counter the effects, and taking this made me fully appreciate how bad the reflux had actually been before that. You should be seeing a good rheumatologist, preferably with a knowledge of scleroderma. If your clinical symptoms do not yet allow for a diagnosis, you should be treated for the symptoms you have (which is what would be happening even with a diagnosis). Get treatment for the Reflux. If you have been diagnosed with Rheumatoid Arthritis, you should be receiving treatment for this. If your Raynaud's is severe, there are treatments which will help that as well.

    Here are some links to our medical pages which may help:

    Esophagus: Reflux (Heartburn) and GERD

    What is Raynaud's?

  13. Hi, Sheryl. Sorry to hear you have yet another thing to face. As you know, I am not a doctor, but both my mother, my ex and his father all suffered from type 2 diabetes. The American Diabetes society provides excellent information on diet and nutrition which is useful even if you don't have diabetes. I believe you can get the booklets free if you are diabetic. While Betty is right that your scleroderma hasn't caused type 2 diabetes directly, the inactivity which results in suffering from a chronic illness can be a contributing factor. I know you have always been an active person so it is even more difficult as your metabolism is used to burning calories and now it is not. You have to be very careful not to start randomly eliminating food categories, such as bread, even though it may seem like the thing to do. In earlier times, diabetics were often put on high protein/fat diets. They have since learned that this can actually create a temporary diabetic condition. What you need is the appropriate balance of wholesome, nutritious foods. Substitute refined carbohydrates with whole grains and fresh fruits, for example. Seeing a nutritionist is an excellent idea.

  14. Hi, Christy. It think it is possible that the number you quote is either not the SED rate, or has been reported or remembered in error. The numbers refer to how quickly the red blood cells fall in a tube under measured circumstances and they refer to millimeters per hour. 1000 mm per hour seems to be impossibly fast, though I am not a doctor.


    Kelley, Sweet's link gives a good overall description. Craig lists the chart 'normals' for the general population, but normal levels can increase with age and also to some degree with excess weight. I agree with everyone that results of 5 sound very good.

  15. Hi, all. I moved part of this thread to the Den so you can talk about books in that more relaxed setting. This is part of Peggy's reply that needs to stay with this thread:


    (If you reply to this, Peggy, I will copy this bit into the post.)


    Thanks everyone. You make me feel alot better. I agree that I tend to multi-task and need to quit doing that as that's when I forget to go and complete one of the tasks that I was doing earlier.


    Christy - I still get tired and have to quit after a chapter or two but its alot better than it used to be. I can tell when I'm too tired to do it as I don't remember at all what I just read. SEE - back to the memory issue again - - I know - - give myself some slack.................



  16. I remember the first time I wore my sheepskin lined boots to the rheumatologist, he said, "Finally. Some sensible shoes!" (Not that I hadn't worn sensible shoes before - he was talking generally about all his patients.) I find the sheepskin interior helps cushion my steps and stave off Raynaud's attacks at the same time. I use soft-soled sheepskin boots around the house. I really miss the boots during the summer. I compensate by wearing really fluffy socks with sandals. My husband hates it when I wear the purple ones, but they are the most comfortable. Who needs fashion? :D

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