janey

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Everything posted by janey

  1. Ron, I too have dSSc and myositis (specifically polymyositis or PM). When my PM was very active in the beginning, I sufferred fatigue and muscle soreness after a shower as well as very dry itchy skin. In fact, my arms and shoulders became so weak that I was unable to wash my own hair. As my CPK dropped the symptoms decreased and now I have no problems taking a shower. I hope your symptoms go away soon and things get better for you. Please keep us informed of how you are doing. Big Hugs,
  2. I'm sorry that I can't help you from a personal experience, but I did find some information on Dexamethasone from our drug info site. Here's some clips from this page: Dexamethasone is in a class of drugs called steroids. Dexamethasone reduces swelling and decreases the body's immune response. It is also used to treat many immune and allergic disorders, such as arthritis, lupus, severe psoriasis, severe asthma, ulcerative colitis, and Crohn's disease. If you do start taking it, I hope it helps. The fact that it's used for severe psoriasis may be why it was chosen by your doctor. Please let us know how it goes. Big Hugs,
  3. Yuk! I hate GERD! A couple of years ago I went through what you are going through and even tried a couple of prescription drugs. Then my rheumatologist prescribed Prilosec OTC. I take two a day and it works wonders. Some days I can go with just one, but to stay consistent, it's best when I take one in the morning and again at night. People on this forum take different things and a lot it works. So I'm sure you'll get more ideas. Hang in there Darling. You'll find something that works for you. Big Hugs,
  4. Judy, Welcome to the forum! I'm sorry that you are here due to your having scleroderma and continuing problems with your skin hardening, but I think you will find this is a great place for support and information. What is your rheumatologist doing to help try to slow the progression of skin hardening? Are you on any type of immunosuppresants? As scleroderma patients we are collagen producing machines, so rather than treat the hard skin, the method is usually to slow down the collagen production. I would discuss this with your rheumatologist. In the meantime, I am providing a link to the ISN page on dry skin and some of the recommended treatments. I hope you find this helpful. Again welcome. Keep stretching. That sure has helped me. Big Hugs,
  5. Barefut, I never got a flu shot until I went on immunosuppresants. Now I get one every year. It does NOT give me the flu. Big Hugs, Janey
  6. Congratulations on your approval for a kidney transplant! I hope everythings turns out as well with the donor. What a jouney you're on! Big Hugs to you Darling, Janey
  7. Patty, Immunosuppresants are a type of anti-rejection drug that are used in high dosages after organs transplants. So that may be what your doctor is referring to. I would have him clarify and then let you know specifically which drug he wants to put you on. Many of us are on immunosuppresants. It's a standard treatment for autoimmune diseases. It sure beats those steroids! But then that's just my opinion. Let us know how the biopsy goes. We'll be thinking of you. Big Hugs,
  8. Janet, The lack of joint pain and stiffness is one of the benefits that I've notice with the MTX. I didn't realize it until recently when I was taken off it due to lung involvement and put on Imuran. After 2 weeks, the stiffness and pain returned. Whenever I stood up I had to pause because my legs were so stiff. Well, the Imuran only lasted 3 weeks and I went off it and back on MTX. It only took 2 days for the stiffness to go away. Amazing stuff! Of course I wish I didn't have to be on any of it. Oh Well. Big Hugs,
  9. Irene, Ditto to everything Sherrill said! Tell your doctor everything. Let us know how the appointment goes. Good luck Big Hugs,
  10. Hi Paula, WOW - 40 years with CREST is a great inspiration for us all. I'm so glad you found us. Your years of experience should be very helpful. I saw in your post that you were prescribed Welbrutrin but weren't filling the prescription due to the insurance. If I may ask, what was it prescribed for? Well, Welcome! We are so glad you are here and look forward to visiting with you more. Big Hugs.
  11. Welcome Birdman's wife! We're glad you found us, but so very sorry to read about your husband diagnosis. I, too have diffuse scleroderma as well as polymyositis. Here's my list: Methotrexate (immunosuppresant) IVIg infusions every 6 weeks (imflamation due to the poly) Prilosec (heartburn) Propafenone (anti-arrythmia) Aspirin (blood thinner) Folic acid Bosentan (pulmonary hypertension) There are a few people on cellcept so hopefully they will find this thread. Here is the ISN page on Scleroderma treatments. Again welcome. Please keep us informed on how the hubby is doing. Big Hugs,
  12. Laurie Jill, Please do keep up informed on how you are doing and how you're handling the MTX. Just be patient with it for a few months. As with all immunosuppresants, they don't kick in right away. It only took a couple of months for me to start seeing results, but for some it takes longer. As Janet pointed out, she didn't see any results after 5 months. It is sutle. I didn't think it was helping much but then I realized it was getting easier and easier for me to swallow and the skin thickening on my hands was no longer progressing. So just be aware of your body as I'm sure you are. I only have a couple of tired days a week due to the MTX, so with your schooling, you might look at taking it on Friday so you'll be ready for class on Monday. I think that is so cool that you are going back to school at 57! You're such an inspiration. Big Hugs,
  13. Lisa, Welcome! I'm glad that you found us but sorry for your having to be here due to your son's diagnosis of morphea. We do have several people on this forum with morphea so I'm sure you'll hear from some of them. I'm providing you with our link to the morphea (localized scleroderma) page. It provides you with information on diagnosis, treatments and much more. Please keep us informed on how your son is doing. And Again, Welcome. Big Hugs,
  14. Collateral Benefits of Fish Oil Therapy for Rheumatoid Arthritis. In a small study, the proportion of patients in remission at 3 years was greater in the Fish Oil group than the No Fish Oil group (72% vs 31%). Editorial, Journal of Rheumatology. Vol 33: No 10 Oct 2006. (Also see: Rheumatoid Arthritis and Alternative Therapies) Visit the ISN newsroom for more news!
  15. Vee, Thanks for letting us know what's going on. Sorry it wasn't better news. I'm not familiar with UofM, but it sounds like you are in excellent hands and they are really going after this lung problem. I hope they find the right treatment and it works wonders for you. Good luck and please keep us a part of your journey. Big Hugs,
  16. LaurieJill, I started on pills then after 4 months switched to injectable. It took a few weeks to feel comfortable giving myself the shot, but now it's a piece of cake. The needles are so very small, you can't even feel it. I do handle the injections much better and everything I have read has said it's not only easier on the stomach, but also less hard on the liver. I've been on injections for 3 years and after a recent, but short experience in trying another immunosuppresant, have realized how well I tolerate MTX and having to take one injection a week rather than 3 more pills a day or in your case, several extra pills on one day, I much prefer the shot. Good luck Darling. I think you'll find less side effects than the pills. I hope so. Keep us informed. Big Hugs,
  17. Is anyone taking Imuran? Did you have any side effects and if so, what were they? How long did they last? I recently was switched from Methotrexate to Imuran and I don't like it! I'm tired all the time now, instead of just a couple days of the week and my cough has become uncontrollable. At times it's so bad I can't catch my breath and then I feel like throwing up. My dosage is 75 mg/ twice a day, but I think I might just take it all at bedtime and see if that helps. What was your dosage and what worked best for you? Your input if greatly appreciated. Big Hugs, Janey
  18. Well, I just got back from the rheumatologist's and things went quite well. He was not at all upset that I went off the Imuran and in fact, agreed that it was the right thing to do. When I told him of the flu like symptoms of last week, he attributed those to the Imuran as well. So we're going to keep me on MTX for a couple more months to see how I do on the Bosentan, then go from there. It was amazing once I stopped the Imuran how much better I felt. After having had 4 straight sleepless nights of coughing, I slept like a baby on Friday night - 8 full hours!!!! I didn't wake up soaking wet and I was actually able to go from a prone position to a standing position within 30 seconds when I got up on Saturday. For several days there just getting out of bed was a 2 minutes chore and I'm talking just getting to the point where I could stand up to move. UGH!!!! So I'm a happy camper :D . My body still has a ways to go to get back to where it was 3 weeks ago, but it already feels a whole lot better! Thanks for all your replies. Big Hugs, Janey
  19. Welcome Nightfrog! I'm sorry your pain is so frustrating. I hope you can find some things that will relieve it. I've provided a link for you at the bottom of this message that are some ideas for naturally relieving your pain. I start the whole perimenopausal thing right after I was diagnosed. When the hot flashes started I thought they were going to drive me nuts, but instead they kept me warm. Now that I'm post-menopausal, I'm thrilled - one less thing to deal with! I hope your journey through this phase in life was as easy as mine. We're very glad that you are here. Please visit us often. Pain Management Big Hugs,
  20. Hey Erin, I'm a retired college instructor working out of the house as a technical writer. I also volunteer several hours a week to ISN. I live with my hubby and two cats and 5 turtles. The turtles have now gone into hypernation, so we want see them again until April. :( Most of my day is at the computer but 3 times a week a friend brings her 2 dogs up and we go walking around the neighbor for an hour. On alternate days I try to stroll in the park that I live across from. I do about 30 minutes of yoga 3 times a week, have lunch with friends, and take fun, relaxing vacations when my hubby plans them. Usually to some place warm where we can swim or snorkel. My hubby is also self-employed and is home about half the time and on a job the other half, so we spend a lot of time together even though it's in separate rooms during the day. Every night however, we cook a wonderfully healthy meal together and talk a lot. It's great living with your best friend! BTW - I do have my picture posted in my controls, so you can click on Janey and go there. Big Hugs,
  21. Patty, I was diagnosed a little over 3 years ago with MCTD (dSSc and polymyositis). My hubby and I had been married 30 years at diagnosis. During those 30 years we had backpacked all through the mountains and canyonlands of the southwest, climbed 14,000 foot mountains, kayaked in the northwest and rafted in Alaska. So watching me lose my ability to get up out of a chair was very hard for him even though he never showed it. He has been with every single minute of every single day. Last night he started planning us a trip a Hawaii in May for 2 weeks of snorkeling because that's the one physical thing that I can still do all out. And it's WARM! I know it is very hard on him, but he has been able to find his own releases. When he takes off and goes flyfishing for a couple of days, I'm thrilled. He needs to do that and unfortunately, sometimes I have to push him to do it. Because of my hubby, my best friend - I still have a very high quality of life. He makes me laugh a lot! Big Hugs, Janey
  22. Hi John, Welcome to the board! We're thrilled you are here. I think you will find this new forum exciting and of course, the members are all wonderful people. Sherrill provided you with a great link on the wound healing ability of hyperbaric, but I remembered a story a while back that we ran. It was a news story about a young women with scleroderma whose friends bought her a hyperbaric chamber and she uses it to "increase her oxygen intake, improved blood flow to her capillaries and relieved her symptoms." Apparently, it was her most effective treatment. Unfortunately, I checked the article and it has gone to a "registration required" site. So if you're interested, search for The Aspen Times, June 28, 2006 edition. The name of the articles was called "A Little Help From My Friends". Big Hugs,
  23. Whirlway, I'd like the join the others in sending my best wishes for your brother-in-law. The "C" word is always hard. but with the remarkable treatments and procedures today the chances of a sustanible quality of life and even a total remission are a lot higher. Heidi provided a couple of great links. I hope you pass them on. Please keep us informed on your brother-in-law's condition. He'll be in our thoughts. Big Hugs,
  24. Denise, I can't give any personal experience but I was able to find a study back in 2001 that showed "Our data suggest that long-term PEX therapy seems to be effective in slowing down the clinical course of patients with severe and rapidly progressive SSc." Here's the study if you would like to read it. Long-term therapy with plasma exchange in systemic sclerosis Apparently, even though it has been shown to be effective there just hasn't been much on it. I found another study backed in 1988 that showed positive results, but not much since then until 2001. Weird! How is it working for you? Have you had any test that have shown improvements? I certainly hope it is working for you. What made your doctor go this route? Just curiosity on my part. Please keep us informed on how you are doing. Big Hugs,
  25. Rosa, What a bummer! I'm so sorry to hear that you've been diagnosed with myositis which I assume is polymyositis. That's another one of those wonderful connective tissue diseases like sclero. Well I'm in the same boat as you are Darling. I have dSSc and poly. I was diagnosed with both at the same time 3 years ago. The high dose prednisone is the normal first line treatment and is very successful for the majority of people. My rheumatologist chose not to go that route because at the time, my sclero was very active and he said the prednisone would not be good for the sclero so we did low dose prednisone (5 mg/day) and methotrexate. That did help for quite a while, but a couple of years later we added IVIg infusion because we just couldn't get that CPK down below 200 and it had been 2 years. Well, that did the trick. August 2005 my CPK took a nose dive to below 100 and has been holding there for more than a year. I can certainly feel the difference. Apparently, the prednisone route has a much faster response than the MTX route, so I hope that is the case with you. I don't know how much you know about it so I'm giving you the link at the Mayo Clinic on polymyositis. Also, I have been living with it for more than 3 years now and have done losts of research, so please feel free to write me anytime. I know the initial diagnosis is hard, but they did catch it and are treating it aggressively. So that's a good thing. Please, keep us informed on how you are doing. You've got lots of friends here. Big Hugs,