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Posts posted by jefa

  1. Hi, Shennen. I have tried searching on various forms of the word. Pheresis by itself brings up discussion of plasma pheresis, which I don't think a dermatologist would be suggesting. Photopheresis is a treatment of the blood by light and does not appear to be used in scleroderma. I am, of course, not medically trained and may be missing something here. There are discussions of various forms of phototherapy, however, on our Morphea Treatments page.


    Perhaps you could give us a little more detail (i.e. what form of scleroderma is to be treated). If I haven't already welcomed you to the Forums, let me do so now. :D

  2. There have been many discussions of disability claims on the forums and each story is a little bit different. One important thing to note, however, is your capability of doing the job which you used to be able to do. So it is not a question of whether you have 'enough to qualify' but whether in your circumstances, your medical condition prevents you from doing a certain job. Having CREST may limit one person's ability to work and another may be able to continue working with CREST indefinitely.


    Your brain injury has obviously affected your ability to hold a job, as you have told us. Feeling guilty is often part of the disability process and something we all have to cope with in may ways, with or without disability. Hopefully our medical page on Coping with Scleroderma may give you some useful perspective.

  3. Hi, Skinsister, and welcome to the ISN Sclero Forums. Your sister is very lucky to have someone who is so involved with her care and to help her find information. The problem about researching for someone else is that you are removed from the original information so in explaining to you what the doctors say, your sister may dilute the information enough to cause confusion. Are you able to attend the doctor's appointments with your sister? Not that it is necessary, just wondering. I think Lizzie is describing a procedure for inserting a porta-cath -- something that can make life a lot easier for someone who must get lots of injections or drips. Except for the word intravenous, however, I am wondering if your sister's doctors may be suggesting the addition of an abdominal feeding tube for parenteral nutrition. We have a few members who receive all of their nutrition this way.


    Lisa has given you a link to our medical page on Gastrointestinal Involvement which discusses this as well as giving answers to some of your other questions. Please check it out and let us know if there is anything else we help with. The link to Dysphagia will give you more specific info about alternate means of feeding and the link to Bowel Dysfunction discusses Pseudo-Obstruction.


    Again, welcome to the Forums and thanks for being such a tremendous support for your sister.

  4. Wohali, I have fixed the link above - apparently the article has been moved since my original post. You should be able to find all the information you need on the Access Biologicals page which is linked in the article:




    There is a FAQ (frequently asked questions) on their site which should answer your questions.


    As for polyclonal antibodies, I am not an expert but I believe that it is a mixture of antibodies which are active against a specific antigen. Any time you see the prefix poly- it means 'many'. Someone else may be able to explain better.

  5. I've never been able to stand a sauna for more than a couple of seconds without feeling faint, but I am no expert. I just wanted to say hello and welcome you to the ISN Sclero Forums. I look forward to hearing more from you and your wife.

  6. Hi, ChefKat - I think the water therapy should be helpful. I can't imagine that they would push you beyond your limits, but be sure to raise this as a concern.


    As for the glucosamine and chondroiton, we just had an article about it earlier this week: Glucosamine and chondroiton don't slow arthritis


    Elsewhere there is a link to MayoClinic.com articles on Glucosamine: Does it affect blood sugar? and Glucosamine supplements: Can they rebuild cartilage?

  7. ChefKat, I am sorry your situation has become so frustrating. I think it must be particularly hard for those of you who are young and just getting started with all life has to offer to be hit with a new set of stumbling blocks. There are several members on site who HAVE managed to get through college in spite of the difficulties. Financial issues are a problem with many people, with and without scleroderma, but if you want something bad enough, there is usually a way to get it. I wish you luck with your search for scholarships and aid and hope the resources listed on the site will pan out for you.


    In the meantime, try to keep yourself from stressing out too much, which is obviously not good. Some of us have found help in our page on Emotional Adjustment and Scleroderma page. You are not a has been. I hope that you will find support from others who have been through similar challenges. Big hugs to you.

  8. Hello, ashu, and welcome to the ISN Sclero Forums. I am so sorry that your daughter has been afflicted by what seems to be an aggressive form of scleroderma and I wish you all the best in finding help for her. I don't have any personal experience to draw from, but there are others who will be able to talk to you about stem cell transplants and share their own experiences. There are several parents of young children who have scleroderma who post on here. Here is our medical page on Juvenile Scleroderma which may give you some useful information:


    Juvenile Scleroderma


    Another useful page is the one on Emotional Adjustment and Scleroderma.


    Please feel free to ask any and all questions that may arise and we will try to answer.

  9. Hello, Leonidas


    I have merged your two threads for your convenience as they are addressing the same issues. First of all, let me welcome you to the ISN Sclero Forums and hope you can find some help.


    Shelley gave you a link for our page with information on Diffuse Scleroderma.


    Janey has also included a link to our information in Spanish: Acerca de la Esclerodermia: Introducción.


    I assume that your mother is under the care of a rheumatologist since she is taking methotrexate. There is no specific treatment for diffuse scleroderma, though she should be under the care of a rheumatologist or even better, a scleroderma specialist. The important thing is for her to be monitored for various problems and the symptoms treated as they arise. What kinds of tests has she already received? Of course her diabetes will need to be kept under control. I presume the methotrexate is given for her arthritis - is it rheumatoid arthritis (an autoimmune disease like scleroderma)? I hope this has been helpful to you.

  10. Hi, Gigi, and welcome to the ISN Sclero Forums. Hang in there with the Plaquenil. It was six months before I started noticing a difference, but it is finally making a difference. I have been taking it for almost 8 months and I have noticed an improvement in swelling and hand pain and in reduced fatigue (not completely gone, but not nearly as bad as it was). Good luck.

  11. Hi, Little Red - great name. I'd also like to add my welcome to the ISN Forums. I look forward to hearing what your doctor has to say and hope that the comments other members have made will help you ask the right questions.

  12. IVIg is IntraVenous Immunoglobulin. This link will fill you in on the treatment.


    IVIg is a blood product extracted from plasma of about 20,000 donors. It contains the pooled human immunoglobulin Type G which are antibodies of the immune system. It is used to treat immune deficiencies and autoimmune and inflammatory diseases.

  13. Ouch! Doesn't it hurt when you laugh?


    I am so sorry you find yourself in this pickle, but at least you are keeping a positive outlook. I don't have any particular suggestions, but good luck on your search. Sometimes when I want to lose myself in something I listen to my mp3 player with headphones. Do you have some good music?

  14. I have found a solution (for my bed, anyway, which has a footboard and a headboard). I have tied up another pillow into a bolster and keep it at the foot of my bed, under my sheet and blankets. If I start to slip, I just push against this bolster - it is actually quite comfy against my achy toes. Sometimes I feel my husband's feet finding their way onto my bolster. :D

  15. Soft pillows piled up can actually make it worse.


    Like Gareth, I use a firm wedge, too, though it lifts about 10 inches at the back. I put my normal pillow on top of it, so it is just like the bed is elevated. You can get them quite cheaply. Most come with a zip on cover and mine came in a pair for about £20. They are probably cheaper in the US. I had similar problems with my husband and his back.

  16. Hi, Celiesblues


    I found this information on the MayoClinic.com article about Raynaud's under the Treatments and Drugs section:


    Birth control pills. If you use birth control pills, you may wish to switch to another method of contraception because these drugs affect your circulation and may make you more prone to attacks.


    Mayo's article on Arginine offers some warnings of danger in some situations (asthma and certain lung conditions, among them). I also came across some medical trial information which warned against use by patients who had previously suffered heart attacks. I would definitely ask my doctor about this if he offered this as a solution.

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