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JustME

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About JustME

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  1. Medication for Sjogren's

    The Salagen can make you very sleepy that might be what he was experiencing. I use Restasis and Systane drops. I also use a humidifier 24/7. A humidifier helps somewhat and is better than nothing. I have heard the tear duct plugs work okay. I would keep trying with the eye drops as that is the best protection. If his eyes get really dry and he rubs them it can cause a corneal tear which if it keeps happening can affect his vision. See if he will put the drops in the lower lid. Have him look in the mirror and pull down the lower lid instead of laying down with the drop coming straight at the middle of the eye this is usually easier for people to do. Hope this helps.
  2. Hi, Yes, I had the same problems as you. I had gastric bypass in July 2011. It has helped me but I have a little more insight to this. I don't really think it is the surgery that helps you but the way you have to eat following the surgery. You have to learn to chew your food really good and only have 1 cup of food 3 times per day with the surgery. A doctor had diagnosed me with esophagitis long before the surgery and said if I could eat 6 small meals per day and chew my food up good it would help. I couldn't do it but I would try that first before having surgery. I don't regret having the surgery but I do wish I could have done it on my own.
  3. Will a Total Hysterectomy Help Scleroderma?

    It (a hysterectomy) can help with anemia and other pain like endometriosis. They are finding that Scleroderma is might be caused by the mixing of fetal cells in the mother's blood. See Fetal Cells and Scleroderma, but they don't make things worse if you already have Scleroderma I don't know why he is saying that unless you are having other problems. if you are done having babies then I myself wouldn't hesitate. If I still wanted babies, I wouldn't let a doctor's opinion stop me from having them.
  4. Hi, Is there anyone that is taking Salagen (brand name) for Sjogren's? I tried to get it from my pharmacy but they said it is not being made anymore. Has anyone else been told the same thing? I was previously taking generic Pilocarpine but awhile back when they changed manufacturers it stopped working for me. Has anyone received any Salagen brand name in the last month? I just couldn't find info about it anywhere and I just want to make sure my pharmacy and/or doctor just doesn't want to do the pre approval paperwork. Thanks!
  5. Tennis Elbow anyone?

    My Scleroderma doctor said people with Scleroderma shouldn't get cortisone shots. He says it can increase the speed at which the Scleroderma advances. He gave me Diclofenac Sodium gel to rub on my arm 4 times a day and after about 1 1/2 weeks the pain went away. When I stopped the cream it would come back so he put me on 75 mg of the pill form of Diclofenac and I take it everyday and it has saved me. But if you have liver problems you want to use the cream because it doesn't affect your liver; the company is required to list liver problems on the package because the FDA requires it. I can't miss a pill or I can feel it coming back. I had physical therapy for about a year and it didn't heal it. My doctor said it may not heal because of the Scleroderma my tendons will be affected.
  6. NYC Surgeon for Nissen Fundoplication

    You should look into a modified Roux-en-Y gastric bypass as well which has shown better success than the fundoplication. You should read this other post and at the bottom you will find a link for a study regarding this. http://www.sclero.org/forums/index.php?/topic/11931-gastric-bypass-with-crest-anyone/
  7. Tennis Elbow anyone?

    Yes, tendonitis is related to Scleroderma. I have had it for about 10 years. The best thing you can do is get PT, ice it and DON'T immobilize it with a sling. The best medicine in my case has been Diclofenac and a diclofenac gel; also a steroid shot. Scleroderma sufferers get a type of tendonitis that is not usually seen in the general population called Tendon Rub. The term tendon rub describes a sound like two pieces of leather rubbing together. This happens when a tendon moves in an inflamed, rough tendon sheath. It happens most often at the elbows, the knees and the ankles. This condition is annoying, and sometimes crippling. But we also are more likely to get regular tendonitis as well.
  8. Gastric Bypass with CREST anyone?

    Thanks for all the advice I really appreciate it. I am at my wits end and this is my last resort. I have done all the diets, exercising, counseling, even went to a famous weight loss resort for 3 weeks. I do have a great team of experts. My gastro doctor worked for years at the Scleroderma clinic at UCLA in California and my rheumatologist is a world renowned specialist in Scleroderma. I have esophagus involvement and my gastric doctor told me about a small study that was done on scleroderma patients and the Roux-n-Y Gastric Bypass improved the esophagus [function]. I will be seeing a counselor, nutritionist and personal trainer for awhile before surgery so my hope is that they can help me get to the bottom of this problem and maybe avoid having surgery but I am keeping it open as an option. Thanks, Kim
  9. I was wondering if anyone here has had gastric bypass surgery? I have started the process of getting the surgery and was wondering if anyone has developed worsening of their sclero symptoms or has it helped? I'm still in the undecided stage of getting the surgery and I am going to start the counseling and nutrition program next month but I would like to hear from you all. I have CREST, pulmonary hypertension, sleep apnea, Sjogren's, Esophagitis, etc, etc so I think I am making the right decision by doing the surgery because the lung involvement has just started and I think I would fare better with this disease if I was at a healthier place. Any advice? Thanks, Kim
  10. Hi, My doctor told me if the neosporin and band aids don't work or take too long to work to use Manuka Honey. Not sure if I'm allowed to say my doctor's name but I will say he is the top Scleroderma expert in the USA. I have followed all his advice and I'm feeling better than ever. Hope this helps you. There is even a thread on sclero.org talking about it.... Manuka Honey
  11. Hi, I had the same problem for about 5 years. I started taking Diclofenac (Voltaren) to help with the tendinitis I was experiencing and it helped immensely with the pain and the arms falling asleep. It also reduced the inflammation in my back from mild scoliosis. So I don't know what helped better reducing the inflammation in the arms or the back (which can cause inflammation that cuts off the nerves causing the tingling) but either way the tingling is gone. You should talk to your doctor about what is going on. I'm not a doctor but this is just what worked for me so maybe they need to look at inflammation being a cause of the tingling. If your doctor does decide to try this drug with you, you might want to ask about checking your liver enzymes every 2 weeks for the first 2 months.
  12. Dry throat

    I'm just guessing here, but it could be Sjogren's disease. With Sjogren's you don't produce saliva or produce very little and usually have dry throat, mouth and dry eyes. Do her eyes water a lot? Some people think if your eyes are watery you don't have dry eyes but watery eyes are actually a thing your body does in an emergency to protect your eyes from getting damaged because they are extremely dry. The easiest thing she could do is get an eye test that tests the moisture level in her eyes. She could do a lip biopsy but not necessary(because it's painful)if eye test is positive for dry eyes. The only thing that I have found to work for my dry throat and mouth is Pilocarpine (brand name Salagen).
  13. Low Pulse

    Hi Jeannie, Thanks for replying! Yes, I had my thyroid checked also electrolyte levels. Everything was fine. Everything seemed to get worse when I started exercising and that is why I thought it may be the heart. It has gotten a little better since I stopped exercising but has not gone away.
  14. Low Pulse

    Does anyone ever have a problem with a low pulse and low blood pressure? I have had recent changes in my pulse that is accompanied by dizziness and back pain. I have had a stress test and echo and my heart doctor says heart is fine. My normal pulse has always been about 80-95 and now it quickly changed to an average of 63 as low as 51. My doctor says this is still within normal range but I read that is true only if you are fit and not having any other symptoms. I am wondering if maybe it is related to the Scleroderma, I have CREST. My doctors have not been able to answer my questions regarding this problem.
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