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Everything posted by janey

  1. janey

    Mayo Clinic Wonder Pill For Pph?

    Hey Darling, Welcome to the forum! I'm very glad that you have found us because it sounds like you and your mother need lots of help. I'm sorry your mother is suffering so with this disease and has put off seeing a specialist for so long. I'm thrilled that she is FINALLY seeing one. There are several new "pills" or treatments for scleroderma lung problems. Please click on this link and read about some of the studies and successes. Believe it or not, but Viagra has been proven to be one of those successes and that may well be the pill that the doctors are referring to. Please read about all these options before meeting with the specialist. That way you'll understand more about what he's talking about. I recently developed lung problems and knowing about my options and the various treatments made the communication between me and the doctor so much better. I was put on Bosentan. I can't say that I've seen results yet, but it's only been a month. Please keep us informed on your mother's progress and visits. Hopefully, now that she's seeing a specialist, she'll start getting the disease treated as well as the symptoms and things will start slowing down and possibly even improve. Big Hugs to you all,
  2. janey

    Thoracic Outlet

    Sweet, Here's is the information page on Thoracic outlet syndrome from Medicinenet.com. It doesn't make any connection between scleroderma and tos. In fact it says "Often no specific cause is found." It has a great section on treatment and it looks like physical therapy is pretty standard in reducing the symptoms. From the pain you are in it does sound like you might consider your doctor's advice to see a PT. If that doesn't work, look for other options. It sounds like Heidi has found a good one. I'm glad you may have found the cause of your pain. Hopefully you'll get some relief soon. Big Hugs,
  3. janey

    Joint Aches And Pains

    Jennifer, I'm sorry your joints hurt! Ouch! Yes, Sclero can cause inflammation of the joints resulting in redness, pain and swelling. It's the same thing that's happening with our hands. My left hip and knee use to drive me bonkers, but I haven't had much problem with it in quite a while. On the link that I gave you there is a study that showed that IVIg treatment helps to reduce joint pain. Maybe that's why I don't have it - I've been getting IVIg treatments for 1.5 years for my polymyositis. What a nice little perk for it also to help eliminate joint inflammation. :D I hope the pain goes away soon! Big Hugs,
  4. janey

    Heart Valve Leaking?

    Dynamic Debz, Glad to see that you are posting after having been a browser for so long! Welcome! It sounds like you have a good doctor! Any doctor that "wants to keep on eye on" something is working in your behalf. I too have shown slightly leaky valves in all my ECG's and I have one every 6 months. My first one was 3 years ago. From the reports, the leaking is staying consistent. My cardiologist said that the new ECG equipment is so sensitive that almost all ECG's some back with some degree of leakage. However, this is a factor that needs to be tracked with scleroderma. With our massive collagen production it could cause the tissue in the heart (valves, conduction tissue and heart muscle) to stiffen. This would keep the valves from closing properly thus producing more and more leakage. So it's a good thing that your doctor wants to track it. As far as the measurement, I have no idea. It can actually been seen in the video of the ECG (a technician showed it to me once) and apparently there is a measurement as well. But I don't know what it is. In reference to the problems you are having with your bowels - there is so much that can go on there due to SSc. Here is our bowel dysfunction page. Maybe you can find what's going on this information. Please bring this problem up with your doctor! We hope continue to post. Please keep us up on how you are doing and any information that you find out from your doctor. Big Hugs,
  5. janey

    Methotrexate Injections

    Sweet I've been on MTX for 3 years with no side effects other than some hair thinning. It looks like you have tons of hair so you probably won't even notice. :) I may have to go off it soon because, in very rare cases, it can cause lung toxicity and that may be part of my lung problems right now. You will need to get your liver enyzmes monitored regularly and take folic acid every day to prevent mouths sore and other possible side effects. For me, MTX was the drug that stopped the fast progression of my disease 3 years ago so it did wonders for me. Good luck with it if you decide to go that route. Big Hugs, Janey
  6. janey

    What Does An Increased Igg Mean?

    Irene, Sorry I'm late in responding to this but I needed to find that "just right" information on IgG. When I started IVIg infusions about 1.5 years ago my niece who's an RN sent me some great information. One thing I found very interesting in her information and it's also in the link I'm providing is "IgG antibodies are the only type of antibody that can cross the placenta. Therefore, the IgG antibodies of a pregnant woman can also help protect her baby (fetus). " As Heidi said, IgG is an antibody that is produced by the immune system to help fight disease. It is the most abundant of the five major types antibodies: IgA, IgG, IgM, IgD, IgE. These antibodies are called immunoglobulins. Here's some info from WebMD. "A person whose immune system produces low levels of antibodies may be at an increased risk of developing repeated infections." "Levels of IgG also increase in IgG multiple myeloma, long-term hepatitis, multiple sclerosis (MS), and some autoimmune diseases." It's all a learning process. I learn something new everyday and this forum is a great source for information and for that question that allows one to seek out new information. Big Hugs,
  7. janey

    PFT For Limited Scleroderma

    Sarah, I found this on the ISN Limited scleroderma page. "Limited Scleroderma is diagnosed when there is tight skin limited to the fingers, along with either pitting digital ulcers (secondary to Raynaud's) and/or lung fibrosis. This is considered to be a "milder" form of Scleroderma. The skin of the face and neck may also be involved in Limited Scleroderma. Limited Scleroderma often causes Raynaud's and esophageal problems. Occasionally other internal organ involvement occurs, but usually only after many years of the disease. The onset and progression of Limited Scleroderma is usually very slow, and the outlook in general is very good " Since there is a possibility down the road of organ involvement, I would think that a baseline PFT wouldn't hurt to have in your file. It's a very noninvasive test and was one of the first test that I was given after diagnosis. Talk to your rheumatologist about it. Big Hugs,
  8. janey

    Scot Trial Vs. Assist Trial

    Dave, Thanks for bringing up the ASSIST study at Notherwestern. Yes, it is confusing with such a close acronyn to ASTIS. I went to the link you provided. It looks like it's just one procedure rather than two like in the SCOT trial. The procedure described is very interesting. Gidget the number of the trial that Dave is talking about is NCT00282425. Now I need to go look at the one you have brought up. Man - these stem cell trials are coming out of the woodwork. That's a good thing! Kinda indicates that things are going right. Both of you - please get us updated on the process and information. Big Hugs,
  9. janey

    Glad To Be Back

    Windie, Wow - You've been on quite a ride Darling. I'm so sorry to read about the brain surgery. However, what a relief that it was operable and benign. Thank you for taking the time to share your story. You're a brave woman with a great attitude. BTW - Happy Birthday to us on Oct 22. I just turned 53. We certainly look forward to hearing more from you and your participate on the forum. Big Hugs,
  10. janey

    Scot Trial Vs. Assist Trial

    Dave, You can never over analyze a big decision like this! I hope those links that were put into your message provides you with more information about both trials. In last week's newsroom we ran this Update on the ASTIS Trial that you might want to review. Apparently the results are looking pretty good. "No treatment-related mortality (TRM) nor unexpected toxicities have yet been observed in either arm with a median follow-up of 18 months" (Sorry I miss read it before). I, too didn't like the aspect of the SCOT Trail that you didn't have a choice as to which treatment you received. I don't know if the same is true for ASTIS. My pulmonary doctor has been pushing the SCOT Trail so I emailed them recently to see if I would even be considered due to my pacemaker. I figured it might be an automatic stopping point - sure enough - I was right. Automatic ineligibility! Oh well - the person that responded did provide the name of a sclero specialist at the Mayo Clinic in Scotsdale, so I might just go get an opinion from a specialist as to how my local doctors are doing in my treatment. I know they have slowed the progress of the disease, but it's still moving. Good luck in your decision. Please keep us updated on journey. Big Hugs,
  11. janey

    Carpal Tunnel Advice

    Irene, I used the wrist splints every night and they have worked wonders. I also used the right one when I was doing a lot of computer work. That way I could rest my wrist on the splint and it would keep it straight. You can get the splints from your doctor or a medical supply store. I, too recommend them. Fortunately the cts symptoms are long gone, replaced with Raynaud's. :blink: Big Hugs, Janey
  12. janey

    Finger Ulcers

    Patty, Like Susie I haven't had this experience either, but we do have a list of creams and things you can do for ulcers. Hopefully you find something that works for you. I would definite go see your rheumatologist because if it is indeed the first of an ulcer you might need to start a treatment to prevent futures one. With the cold weather approaching you need to be looking at prevention. I hope the pain goes away very soon and that the sore subsides without advancing further. Let us know how you are doing. Big Hugs,
  13. janey

    Methotrexate Injections

    Heddy, Thanks for the update. I'm glad you are willing to go the injectable route with the MTX. From everything I have read, it's actually easier on the organs, specifically the liver, than the pill form. My hubby gave me my first few injections then I took them over after a few weeks. It was a piece of cake. Remember that it does take a few months to feel the effects of the MTX, so be patient. I do hope you start feeling better soon. I'm glad to hear your attitude about living with this disease! A positive attitude is some of our best medicine. Big Hugs,
  14. janey

    Stem Cells Transplantation

    Kalin, I wish I could answer your question, but as Sheryl said - You're the first person in this forum that we know of that has gone through this procedure. So this is very unknown territory. We do have some personal stories here on ISN that you might read and find an answer. As always, I'm sure it's different for everyone and that there are several variables in determining how fast your body responds to the transplant. All of us here want to know how you progress and hear about your experience. I know several people are considering a sct so your personal experience will be invaluable to us once you feel up to you. I wish you a fast and long-lasting recovery.
  15. janey

    Cortizone Shot, ?physical Therapy

    Krista, I have polymyositis and gentle exercise and stetching is extremely important. The trick is not to exercise to the point of exhaustion or to tire the muscles. If you don't move the muscles they could atrophy which is something you definitely don't want to happen. So I support Shelley in suggesting that you should work with the PT as suggested by your doctor. Just make sure that the PT knows that you have poly so that he creates exercises that move the muscles without stressing them. Please let us know how things go and if the PT helps. Big Hugs,
  16. Jennifer, Have you asked your pulmonary doctor this question? I would think that a pulmonologist or cardiologist would be the best sources for getting a reliable answer to this. Now I have a question for you - Why were you prescribed oxygen 24/7 if your O2 sat doesn't fall below 90? I ask because a recent evaluation by my pulmonary doctor said that since my O2 sat dropped below 90 when walking, I could qualify for oxygen. I told her I would just slow down and see how the Bosentan works. Next week she's going to send me home with a monitor to record my O2 sat while I'm sleeping. She said that O2 sat during sleep sometimes simiulates O2 sat during exercise. I found that quite interesting. Has your O2 been monitored during sleep? Please ask a doctor your question and let us know what you find out. Big Hugs,
  17. janey

    Ventricular Diastolic Dysfunction

    Patty, Anytime a doctor tells you to limit yourself, it's scary. I'm sorry your recent diagnosis brought about those instructions. I've been told that a couple of times, but once the treatment gets started and kicks in, I've been given the go ahead to start exercising again - albeit, slowly. I'm in that mode right now in limiting my activity until the new drugs kick in. So please follow your doctor's advice and don't put your body under any undue stress. Did he talk about treatment - what and when? When do you see him next? Please let us know how you are doing and what's going on to deal with this new symptom. So take it easy, treat yourself good with some pampering stuff like a haircut, manicure, pedicure - anything that makes you feel good without too much activity on your part. Big Hugs Darling,
  18. janey

    Relief From Gritty Eyes.

    Irene, Sherrill provided some great information and since she has the same problems as you, what a great source! Yes, as she says, you should be seeing an ophthalmologist. Just one more member of your health team. The dryness around your eyes may be due to the scleroderma as well as the SS. Here's a link to Sjogren's Syndrome: Dry Eyes. You might find some useful information here as well. Let us know if you find something that works for you. Also, please let me know if you did not receive my private message. Big Hugs,
  19. janey

    Relief From Gritty Eyes.

    Irene, My eye doctor recommended an OTC lubricant eye drop that works pretty good for me. I'll send you a private message with the brand name. You might want to make an appointment with your eye doctor. They're probably more qualify to help you out with the eye problem. I hope you find a solution. I know how uncomfortable that is. Big Hugs,
  20. janey

    Fingers Puckering Or Something

    Luvbnmom, Welcome back! It's great that you found us and got signed up. I trust the sign up process was easy. In reference to your fingers - it doesn't a ring a bell for me. Mine just got swollen, tight skin and then shiney then the skin started getting tough. My fingers were really tender to bumps and scratches and hurt like crazy when that happened, but all that has gone away and my hands are back to normal except for a feminine curve to the fingers. Has your rheumatologist looked at your hands? Maybe he would have an answer. Big Hugs,
  21. janey

    Vomiting Blood

    Michelle, Checking to see how you are doing. Were you able to see a doctor ? Have they determined what's going on? Please let us know how you are doing. Big Hugsk
  22. janey

    What Is Plaquenil?

    Beverly, Go to How to add a avatar to your message and this will tell you how to put a picture (avatar) with all your postings. Big Hugs,
  23. janey

    Preventing Progression

    JJ, Boy do you ask not only a very BIG question, but a very HARD question! How do we prevent progression? Every time I think the disease has leveled out, I get a new development. At least now, with all the regularly scheduled testing, I've caught the new symptoms early. So that would be my best suggestion is to get your 6 month checkups for all organs, periodic bloodwork for the major organs and CBC and stay in touch with your body. When you feel something new happening, make an appointment and check it out. In the meantime, live each day to its fullest. Accept the fact that you do have a disease or two (as in my case) and that it's just part of your job in dealing with it. Don't let it control you, but rather you control it. Maintain a great attitude about life, eat healthy, keep moving even though it may be slower and harder than before, maintain contacts with friends and family. I have rule that I go out to lunch with at least one friend each week. I love that rule! This week I have two lunch dates. WhooHoo! Everytime I start feeling sorry for myself I see someone a lot worse off than me and it kicks me back to reality. Attitude, attitude and did I mention - attitude :D Use us to cheer you up on those down days and on those days that you feel good, help one of us cheer up. We're all in this together Big, big Hugs,
  24. janey

    St. Louis Rheumy/sclero Experts?

    Krista, I couldn't find a scleroderma specialist in your area through ISN, but using the "find a rheumatologist" link I did get this list of St. Louis rheumatologists. You could do some internet research on each of them and see if they have a connective tissue specialty or even call them to see if they have treat scleroderma patients. Good luck! Finding a good rheumatologist is so important. Please let us know how it goes. Big Hugs,
  25. janey

    Heartburn Relief?

    Erin, I've tried various prescription ppi's but I keep going back to prilosec. My rheumatologist wrote me a prescription for it so that I can use the cost of it toward my medical expenses since it's the only thing that works for me. I do have to take two a day which ends up running over $30/month just for heartburn medicine, but the relief is well worth it. I hope you get some relief soon. You need to take care of that heartburn so you don't end up with esophagus damage. Big Hugs,