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Posts posted by jefa

  1. Hi, B. So glad things have worked out so well for you. It is unfortunate that not everyone has the same luck with their treatments. I suppose there is a lot more to it than luck, as you mentioned, but I am happy for you, anyway.

  2. When I was a child, mom used to heat bricks in the oven and wrap them in a towel. It was nice and toastie to put feet against. My husband has always used a hot water bottle for his feet, but since my daughter gave me some wheat bags, we have been using them instead. Very nice on the feet and no worry about leaking.

  3. Hello, Mary


    First of all don't panic. It is so easy to get wound up in all this information and get completely stressed out. Since you are seeing your doctor about this, continue to do this and ask these questions. It might be a good idea to write everything down in the form of questions for her. Be honest with her about the drinking and smoking. I am not a doctor, but I have read about methotrexate and know that you should not be drinking at all while taking it. Smoking and Raynaud's do not mix, so you should really try to get some help stopping smoking. Hepatitis can be tested for if it is a concern. SLE is Systemic Lupus Erythematosus and Sjogrens is another autoimmune disease which can exist on its own or alongside others. I have inflammatory arthropathy (inflammatory arthritis) as well as Raynaud's. I don't know what DDD means but R/O means rule out, so I don't know whether the note means that morphea needs to be ruled out or has been ruled out. Do make a list of questions for your doctor and let her know all of your concerns.

  4. Let me add my welcome to the ISN Sclero Forums, celiesblues. I am not a doctor and it is impossible for any of us to make a diagnosis or even an informed opinion without a physical examination and the appropriate tests, but what you describe sounds more like pitting edema. Here is a MedicineNet.com article on Edema (Pitting and Non-Pitting) which explains the difference. It is my understanding that the finger swelling that comes in the first stages of scleroderma is of the non-pitting variety. Whatever the cause, it is good you are seeing someone about it. Let us know what your doctors say.

  5. Hi, aka79


    Welcome to the ISN Forums. Janey has given you some excellent advice. Get on top of that IBS with your doctors and get on with the important business of being young and involved with life. It is so easy to get carried away reading and obsessing about something you might have. The markers are there to point doctors in the right direction, but ultimately they will only treat clinical symptoms. Sounds like your rheumatologist is on the right track.

  6. Wow, I am impressed, lady! My mom and I used to do a lot of this when we lived in the country. I even did a bit of jelly making when I lived near Washington, DC (we had grape vines and a cherry tree). But it has been years since I got involved with pears and peach preserves, piccalilli, pickled peaches and apple butter. We never had enough greens to put up - they all got eaten fairly quickly with 6 of us. Same with corn on the cob and tomatoes - they went straight from the garden to the plate. Extra zucchini got traded to the neighbours for other things.

  7. Hi, Lyn. I am sorry to hear you are suffering with your hands. It can be very painful for many, especially if you work with them. I am glad you decided to come back and give the new site a try again after all this time. The color changes in Raynaud's very from person to person. Here is our page on Raynaud's for more information. I have had quite a bit of hand pain from inflammation of the joints as well as tendons, though no calcification. I have found some relief from anti-inflammatory medication. You may want to ask your doctor about that and about something to control the Raynaud's.

  8. Hi, Barbara B. I'd like to welcome you and your family to the ISN Sclero Forums which I am sure will be a great help to you in the way of information and support. It can be overwhelming at first, so the first advice I have is relax a bit - worrying won't help anyone and stress can make every burden seem bigger. Here is our list of Scleroderma Specialists in the USA which may be useful but I am sure those in the area will give you more specific advice if they can. Is your mother's current doctor a rheumatologist? I look forward to getting to know you better.

  9. Welcome to the ISN Sclero Forums, Looking4answers. You must be really confused by the conflicting information. I don't know how you found this CREST specialist, but perhaps you should try to find another scleroderma specialist. Here is our page on Systemic Sclerosis/CREST Syndrome which should fill in some of the blanks for you. As you will see from the information given, the name CREST applies to the symptomology of Calcinosis, Raynaud's, Esophageal problems, Sclerodactyly and Telangiactasia. SCL 70 antibodies indicate a possibility of Diffuse Systemic Sclerosis, but the presence (or absence) isn't necessarily conclusive.


    Here is the link Bowbec referred to of Scleroderma Experts.

  10. Hi, Norma. Welcome to the ISN Sclero Forums. I hope you have had a chance to read some of these comments and look forward to getting to know you better. For me, fatigue is the most difficult symptom to cope with. I would be lost without my daily naps.


    For your reading pleasure between naps, I propose having a look at our page on Scleroderma Fatigue.

  11. Is it possible that there is something else that you are allergic to -- ham is full of preservatives and many other products contain preservatives such as sulfides which are now listed on labels. Some people are allergic to iodine which is in iodized salt and some shellfish. I would definitely talk to an allergist or some other specialist about this. A paper bag would work for an anxiety attack, but if you are needing oxygen, then the paper bag could make it worse. I suspect that stressing about this isn't helping very much. Do let us know what you find out.

  12. To all those who have mentioned Domperidone, please note that this drug is NOT approved by the FDA for any purpose in the USA. The FDA is still issuing warning letters to pharmaceutical companies and compounding agencies about its use.

    FDA Alert: Detention without Physical Examination of Domperidone, brands names Motilium, Euciton, Cilroton, Praxis, Seronex, Emiken. Domperidone is not approved for any use in the you.S. There have been several published reports and case studies of cardiac arrhythmias, cardiac arrest and sudden death in patients receiving an intravenous form of domperidone. U.S. Food and Drug Administration (FDA). 2004.

    This warning is found on both our FDA Warnings page and our Overview of Gastrointestinal Involvement page.

  13. Hi, folks. Let me answer some of your questions. Firstly, "magic mouthwash" is a term which is applied to any number of concoctions prescribed by a doctor or given by a pharmacist to treat a particular condition; so one person's magic mouthwash is not necessarily the same as another. The combination should be geared to your needs and prescribed with your other medications in mind. We sometimes hear of a "gastric cocktail" which also varies in content.


    Please talk to your doctors about this if it sounds like something you might need or wish to try.


    As for brand names, we do not allow use of brand names of over the counter products, though most prescription brand names are allowable except for some controlled substances (because of personal security). Please use the generic names for products such as acetaminophen instead of Tylenol, liquid antacid medication instead of Maalox, etc.


    You may mention brand names when they are included in one of the medical pages of the site, for example Biotene products listed on our medical pages. I hope you will find our pages on Sjogren's Syndrome and Scleroderma Dental Involvement informative and useful.

  14. Hi, LoriAnn


    Sounds like a real problem and I feel for you. I am not a doctor, but while your overall health may have an effect, having scleroderma does not necessarily mean you have a weakened immune system, unless, of course, you are on immunosuppressants. It is an autoimmune disease in which the body is mistakenly attacking its own cells.


    I do the think infectious disease clinic is a good idea. Have you looked carefully at hygiene issues? Are you wearing socks all the time, for example, which may be harboring the infection? I can remember my mother boiling things when there was a staph infection going on. I do hope you can get some satisfaction on this soon.

  15. When I got my cockatiel a few years ago, I read a lot about what was safe and what was not for the bird. What kept coming up as safe on every list was vinegar. I remember as a child the lovely smell of vinegar when my mother cleaned windows. So I took an old spray bottle and made a 5% solution of vinegar in water. I have been using it everywhere. I discovered that if I put a small bowl in the microwave with vinegar in it for a minute or two the sides wipe down easily with a damp cloth. The same goes for the oven. Some stronger vinegar solution (about half and half) in a pyrex bowl in a warm oven for an hour - long enough for it to get steamy leaves the sides of the oven fairly easy to clean. It works a treat on windows (polish with a bit of crumpled newspaper, a trick from a guy who used to detail cars. Salt is good for cleaning out vases, just sprinkle it directly on a damp sponge. A bit of baking soda on a damp clothe is a lovely way to polish chrome surfaces like the toaster.


    I wipe down the tiles in the bathroom after my shower with an old towel. I don't even use cleaner on them - the steam seems to be enough. The only place I still use chemicals is bathroom mousse in the toilet or around the tub as it just melts everything away so nicely.

  16. I agree with Judy that you should forego the wine, given your symptoms. Your liver will appreciate the consideration and I am reasonably sure that you and your hubby can think of some other appropriate celebratory activities. :D

  17. Welcome to the ISN Sclero Forums. I am sorry to hear about your difficulties, but you are on the right track working with the doctors to find the cause. As Judy mentioned, not everything that hits us is scleroderma related. It is sometimes comforting or encouraging to find out that what you may experience is shared by others, but there is always a danger that you will ignore something because it seems to be shared with others in the same boat and miss getting it taken care of.

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