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Posts posted by janey

  1. Karen,

    It's so good to hear from you! However, I'm sorry to read about your breathing problems. There are so many things that can cause shortness of breath that it's hard to nail it down. Like you, I'm overweight for my size and my doctors keep telling me to lose weight. A couple of years ago my cardiologist actually started me on an exercise program at a rehab center. It was great! The technicians there helped me with a start up program and got me to a level that I'm comfortable with. The trick was to start off very, very slow. That was extremely hard from me since I use to be the one that everyone tried to keep up with, but it worked. My starting pace on the treadmill was 1.0 mile per hour!!! At first I could only do that for 10 minutes. Within 6 months I was up to 2.5 mph for 45 minutes 3 times a week. I did find that 45 minutes made my joints hurt at night, so now I just do 30 minutes 3 times a week and I have very little post-activity pain. On the other days, I do about 10 minutes on a stationary bike that I have at the house.


    So I would suggest if your doctors want you to lose weight, then ask one of them to help you with an exercise program through a rehab facility. I didn't lose as much weight as they wanted me to, but at least I'm not gaining anymore and I can handle the day-to-day chores and activities SO MUCH better. I love Jeannie's idea of keeping a log of what you eat and such. If I did that it would be extremely convincing since I eat a third of what my husband eats and I gain weight!


    Hope you feel better soon and please, don't be a stranger!

  2. WOW - I missed this thread also. Shame on me. I'm so sorry to read about everything you are going through Darlin! This is such an up and down disease and those down years act like a vacuum and suck everything out of us. But from my experience, bad years are soon followed by better years and maybe even a "good" so I'll keep my fingers crossed that now that you've had that bad year, that 2011 is awesome!!!!!!!!!!!!! Hope you find that magic pill and that you begin to feel better both physically and emotionally.


    Lots and lots of hugs your way.

  3. Why Keeping Little Girls Squeaky Clean Could Make Them Sick.


    There's a growing body of research showing that children exposed to lots of germs early in life are less likely to develop allergies, asthma or autoimmune disorders as they grow up. Whitney Blair Wyckoff. SHOTS. NPR. 02/03/11.


    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

  4. Arthritis Patients Face Increased Risk of Blood Clots.


    People with lupus, rheumatoid arthritis and other autoimmune diseases are more likely to get dangerous blood clots when hospitalized. Researchers say it’s possible that inflammation is causing this increased risk. Jennifer Davis. Arthritis Today. 01/19/11.


    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

  5. New research finds pattern for detecting 'false-positive' ANA results.


    The presence of antinuclear antibodies (ANA) indicates the possibility of autoimmunity. However, studies have shown that a "false-positive" ANA test occurs in up to 13% of healthy individuals. The Medical News. 01/04/11. (Also see: Antibodies)


    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

  6. Antibody Pattern Identifies Rheumatic Disease Patients.


    Antinuclear Antibody-HEp-2 (ANA-HEp-2) pattern and titer can be used to differentiate between ANA-positive healthy individuals and patients with autoimmune rheumatic diseases (ARDs), according to results from a study published in the January issue of Arthritis & Rheumatism. (HealthDay News). DoctorsLounge. 01/11/11. (Also see: Antibodies)


    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

  7. Hi Queenie,

    I'm very sorry that you are in so much pain. That can be so exhausting, not only physically, but emotionally. I hope you can get some effective relief soon. In reference to your question, please consult your doctor for the final decision. I do have some questions and comments. Do you require supplementary oxygen and if so, do you require it 100% of the time or just when moving/exercising? If you don't require supplemental oxygen, then I personally don't see any reason why you couldn't fly. I require O2 when I move around too much or too fast and when I sleep, so I could fly with no problems. Just in case, I do have a FAA approved portable concentrator that can get me to and from the gate, but I haven't flown since I bought it. Some O2 rental companies will set you up with a concentrator at your destination, if you can fly without O2. Lots of unknowns. If at all possible, I hope you get to go on your vacation. Continuing to live is so important and having fun with friends and family is worth the post-exhaustion.

  8. Well, I must be one of the few that have actually had success in such a program. I wasn't really given a choice, but that's o.k. because it's been invaluable. When I was hospitalized a few years ago a nurse contacted my husband and said that she was the case manager/nursing consult for my insurance. Since I was totally out of it and I had always been the one that dealt with insurance issues, my husband was at a lost. The nurse helped my husband in dealing with the doctors and the hospital and then once I got out of the hospital, in dealing with the bills that started coming in - none of which I had to pay - and SHE took care of it. Recently, my insurance company sent a letter saying they "preferred" a certain company to handle my IVIg infusions. I contacted my case manager and he (a new one) patiently listened to my concerns of switching to a new clinic after using the same one for over 6 years and with a lot of success. He worked with my rheumatologist, the "new IVIg provider" and the insurance company to set up a system where my rheumatologist purchases the medication directly from the new provider and they ship the IVIg directly to my current infusion clinic. This eliminated the middle man (thus less costs to the insurance company and the rheumatologist it turns out) and allowed me to stay at my current clinic. There have been a couple of other issues in which my case manager has been helpful, so for me - this process has been invaluable!


    I just posted an article on the success of Team-based treatment for chronically ill patients like us, so be sure to take a look at it. It might provide you some information as well.

  9. Team-Based Treatment Helps Those With Cluster of Chronic Illnesses.


    A treatment team headed by an experienced nurse improved the health of patients suffering from multiple chronic illnesses such as heart disease, diabetes and depression. Amanda Gardner HealthDay News. (Bloomberg BusinessWeek) 12/29/10. (Also see: Living with Chronic Illness and Depression)


    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

  10. Why Your Genes Don't Determine Your Health.


    The story of your health is much more complex than genetic programming. It is ultimately determined by the dynamic interplay of the environment washing over genes creating the "you" of this moment. Mark Hyman. The Huffington Post. 01/02/11. (Also see: Genetics)


    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

  11. J,

    I'm so sorry to read about what happened between you and your friend. Unfortunately, what you experienced is not uncommon. We all have "friends" that can't handle change and don't want to believe that you are ill and that it will change you and thus the relationship that you two have. So the way she is acting, may be the only way that she knows how to handle it because she doesn't want to believe it. I've had this disease for over 7 years now and I have lost a couple of friends that I had had for over 20 years. However, I have also develop new friendships. These new friendship are with people that understand what I am going through or "care" enough about me that they are willing to accept what I can and can't do. So unfortunately, sometimes - sick or not - we do lose friends, but there are always others out there. It might be good to distance yourself for a while and see what happens. Maybe your friend will do some of her own research to better understand what you are dealing with; however, if she doesn't, then maybe the continued friendship was not meant to be during this stage of your life. I know this is tough. It was tough for me, but I'm better off now and have some great relationships with new people. Please try to more forward so that you can reduce the amount of stress. Stress is NOT good for us. I know that's easier said than done, but stress is always something we should always try to manage.


    I'm so glad that you are using this forum to vent. That's what we are hear for and I hope it helps you.

  12. Scleroderma Family Registry and DNA Repository on Facebook.


    It was started by Dr Maureen Mayes in 2001 at the Wayne State University, Detroit, MI. Since then, it has relocated to UT Houston Medical School and gained over 6000 subjects. We are always in need of more patients willing to participate. Facebook. December 2010.

    According to the most recent count, the Scleroderma DNA Registry needs 250 more subjects with Scleroderma as well as 250 more controls to meet its goal and perform the DNA validation analysis. We are currently at 7,143 subjects and controls. Give us a call if you'd like to participate! Facebook. October 6 2010. (Also see: Scleroderma Family Registry and DNA Repository)


    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

  13. Acupuncture Changes Brain's Perception And Processing Of Pain.


    Using functional magnetic resonance imaging (fMRI), researchers have captured pictures of the brain while patients experienced a pain stimulus with and without acupuncture to determine acupuncture's effect on how the brain processes pain. Results of the study demonstrated activation of brain areas involved in pain perception was significantly reduced or modulated under acupuncture and suggest the effectiveness of acupuncture. Medical News Today. 11/30/10. (Also see: Acupuncture)


    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

  14. Mollie,

    WOW! A week of headache! That's not good. That did happen to me once and it was because the nurse thought he knew better than the protocol and that I could take a faster flow rate than called for. He ramped me up every 10 to 15 minutes rather than the protocol of every 30 minutes and was able to cut 2 hours off the total infusion time. I felt horrible for a week, just like you. Please make sure that the proper protocol is being used. Each manufacturer has a different protocol because the solution percentages differ. The one I'm doing now starts me at a very low flow rate and ramps up every 30 minutes. It takes about 3 hours to get me to maximum flow rate at which point it goes pretty fast. Please ask to read the manufacturer's protocol and talk to the infusion nurse to make sure you both agree. I have a copy of the protocol in my records and study each time before I go in. Let me know what you find out. Happy New Year Darlin!

  15. enjoytheride,

    I've changed my GERD medication 4 times in 7 years. Each time, the change would be gradual, never sudden. I would first start getting heartbutn, then the time without heartburn would get shorter and shorter between doses.


    I'm no doctor, but I would think that having a sudden reflux event is not necessarily due to your medication not working, but rather doing one or more of the No-No's associated with living with reflux. I have had a sudden event when I eat too much, too late in the evening and then try to go to bed within 3 hours of having eaten. I end up having a coughing fit that doesn't stop until I throw up. Then I have to sit in a chair for an hour before going back to bed. So take a look at your evening and see if maybe it was circumstance rather than medication. Even though we take reflux meds, we still have to make a few lifestyle changes to help them out. I take 2 prevacid a day and still sleep with a wedge and 3 pillows.


    If it continues, please talk to your doctor. let us know how you are doing.

  16. Welcome Back Tawanda!

    Well, you certainly have been dealing with this for quite a long time. Have you been on any medications or treatments? From your message, it doesn't sound like it. Daily fatigue is one of the hardest things to deal with and people just don't understand it. I never did until I experienced it myself. Because other things are happening, please see a rheumatologist. They are trained for such diseases and know the "special" treatments needed to help us. Sounds like your primary care physician has been great, and he is really considering you by suggesting you see a specialist. Please don't let a doctor ever tell you to "deal with it" again! If a doctor can't or won't help you, then you need to get another doctor.


    Please don't be away so long next time. Let us know how you are doing and what you do to help yourself. There are treatments that can help you!

  17. Hello Darling,

    I'm so sorry to read that you're having a bad time right now. Please don't punish yourself for it, because it is something that we all go through and it's natural. Most times when I feel down I try really hard to be distracted with a funny movie, hanging out with a friend, or a good book - anything to get me thinking about the good things in my life. However, there have been times when cuddling up under a blanket with the cat and a good cry is exactly what I need. It helps get some of the stress out of your system. We do a have "coping strategies" page that might help provide ideas on how to deal with the emotional stress of this disease. You need to find what works for you because we all deal with things different.


    I'm glad you came here for help. We all understand and have experience with what you are going through. So please always come here for support and lots and lots of hugs.

  18. Hey LC,


    Glad to read that your son's ECG came out well. Have you checked out the information we have methotrexate and plaquenil? The methotrexate section has a study about methotrexate in juvenile scleroderma. You might find it interesting. Combination therapies are sometimes used with scleroderma and other rheumatic diseases so apparently your son's doctor feels that such a treatment is needed at this time.


    You mentioned that your son will be stopping the prednisone at the end of this month. Is he already in the tapering process? If not, please talk to his doctor, because usually, one has to slowly come off of prednisone to prevent withdrawal side effects.


    I hope that he continues to show improvement!

  19. Vanessa,


    I'm sorry to read about your diagnosis of breast cancer, but it's good that you have such a positive attitude. Breast cancer diagnosis, treatment and prognosis has greatly improved in just the past few years and, based on the treatment process that you described, it sounds as though you will benefit from all those improvements.


    Of course the support of your new love, family and friends are also a great benefit. You are so lucky to have such support. Please stay positive and let us know how you are doing. You will be in our thoughts.

  20. Winning Formulas to Manage Stress.


    Stress and anxiety interfere with your immune system, putting you at an increased risk of allergies, autoimmune diseases; hormone disruption, heart disease and digestive issues, as well as making us age faster. Most of the stress in our lives can be managed or eliminated with some of my simple winning formulas. Paula Owens. Ahwatukee.com. 12/01/10. (Also see: Reducing Stress)


    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

  21. Mollie,

    I've been doing IVIg infusions for 6.5 years. Originally, I was started on them because of my polymyositis (another connective tissue disease), not my scleroderma. Like you, I would feel great for 3 to 3.5 weeks, then started getting fatigued again. I was getting them every 4 weeks at the time. Once my bloodwork, specifically my CPK (an enzyme that is tracked for polymyositis) became normal, we started stretching the time between infusion out to 5 weeks, then 6 weeks and so on. The more infusions I received, the longer the period of non-fatigue I experienced. I am now at 10 weeks and have been for a year. I can go the entire 10 weeks without fatigue, so it's great!!!! We're hoping that next year I can stretch it out to every quarter, but that depends on my CPK. So far so good. Hopefully after a few infusions, the fatigue won't come to visit you between infusions.


    Like you, I do get the after infusion headache, but my isn't minor. It's pretty much a 24 hour migraine that comes exactly 24 hours after I'm unplugged and lasts exactly 24 hours, then I feel great for weeks!


    I hope the infusions help you as much as they have helped me! Please keep us informed on how you are doing and if you have other questions, please do not hesitate to ask.