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Everything posted by Sarahp

  1. I got mine yesterday. My rheumatologist recommends flu shots yearly especially since I am on Cellcept and immunosuppressed. The only ill effects from the shot yesterday is a slightly sore upper arm. Sarah
  2. I am also on CellCept. I have been taking it for two years. I see the rheumatologist August 13 and will discuss this black box warning. I will post if I learn anything at that appointment. Has anyone else who is on CellCept had a conversation with their rheumatologist about the new warning?
  3. Hi Barefut I purchased for about 20.00 a hard boiled egg cooker. I am very happy with it. A measuring cup that has a sharp nail on the bottom is included. You place the eggs in the cooker and pierce the shell so there is a small hole. Add the measured water, put on the lid, push in the button and eggs are ready in 16 minutes. The eggs peel easily after they cool. Mine holds up to 7 eggs. I have noticed the cooker in several stores. Sarah
  4. Hi Bookworm I heartily agree that prevention and early treatment is needed to avoid going through the painful finger ulcer ordeal. I did have the tip of the index finger on my dominant hand self-amputate. I hit the finger accidentally on the kitchen counter and the black tip fell off. It is functional and the nail is curved. But the other two finger tips were too infected to be saved. My insurance did approve Viagra two years ago but I ended up not taking it. I had started coumadin after being on Plavix and aspirin and the existing ulcers healed and I have not gotten new ones. Since I have APS a coagulant was needed. Take care Sarah
  5. Hi AmyTx Welcome to the Forum. I see this is your first post. Three years ago I went through a similiar experince as you. I feel my rheumatologist did not treat me aggresively for my finger ulcers. As a result I needed surgery on two finger tips on my non-dominant that had developed dry gangrene. It was the most painful experience of my life. When a foul oder with drainage began the hand surgeon at a medical center agreed amputation was needed. My fingers healed nicely. I since have switched Rheums and have not had a finger ulcer. This rheumatologist has placed me on a combination of meds that control the APS and Raynaud's. Sarah
  6. Great article and something that I did two years ago. I was very unhappy with my rheumatologist who I had seen for 20 years. I heard about a rheumatologist who had started her practice in a town about 30 minutes away. My Scleroderma support leader had good things to say about her. I did not need a referral to make an appointment. I had my records from current rheumatologist which she went over. After a thorough examination, recommendations for treatment and suggestions for further testing I asked if she would treat me. I am so glad I switched and often wonder what condition I would be in today if I had remained with my old rheumatologist. It was difficult telling my old rheumatologist he was fired. I had an appointment scheduled with him a few days later. He did not take it well or try to talk to me about why I was switching. He stood up and started to leave the room when I told him. He could not get out of the room fast enough. Sarah
  7. Hi Barefut I have been on 3000mg Cellcept for one year and have been stable. I am also on 400mg Plaquenil, 5mg Prednisone, Nexium, Coumadin, Nifedipine, Lipitor, and Enalapril. I received chemotherapy of Rituxin/Cytoxin 18 months ago and was then put on Cellcept 6 months later. Rheum feels I should remain on the Cellcept. If my dsDNA remains negative and other blood tests are normal at my next blood test in 6 weeks I may be reducing the Cellcept dosage to 2000mg. I am also interested in hearing how others have done who have reduced Cellcept or gone off it after being stable for a year or more. Good question. Sarah
  8. I also have the antiphospholipid syndrome, APS. It wasn't't until 20 years after my Lupus diagnosis that I had problems with digital ulcers and blood tests showed I had antiphospholipid antibodies. I also have an an overlap of limited Scleroderma. I am on Coumadin, Plaquenil, Prednisone and Cellcept and I have been doing well. No further APS symptoms or ulcers. APS is definitely a disease to be tested for since it can be very serious and can cause miscarriages, DVT's and ulcers. I am finding that many Rheums don't do the blood test until blood clots develop or digits become gangrene as in my case. Take care Sarah
  9. I was diagnosis with Lupus 25 years ago. The first symptom I had was Raynaud's. The Raynaud's began while I was pregnant. After the pregnancy the Lupus symptoms began and I was sent to a rheumatologist who diagnosis Lupus. All during this time rheumatologist said my fingers showed signs of CREST. I had a positive RNP and high ANA 1:1280 so was told I had MCTD. 18 months ago my new rheumatologist gave me the diagnosis of Lupus with an overlap of limited Scleroderma. I have the dsDNA which is specific for Lupus. Sarah
  10. I was also told my case will be reviewed in 3 to 5 years. Eight years went by? WOW I was awarded SSDI 11/2004. My initial case from when I submitted paperwork to when I was awarded took about 8 weeks. My husband helped me by filling out the form online. Hubby took all the papers needed to SS office. I had tons of documentation from 3 Rheums, 3 surgeons, Psychiatrist and Therapist. Sarah
  11. Sam I am sorry you have not heard yet. I know how terrible it is that you are made to wait. My award was very strange. I filed all the paperwork. I got a letter saying I needed to be examined by a doctor. Then before I had the appointment, I received a phone call from SSDI saying a decision had been reached and I did not need to keep the appointment. When I asked what the decision was I was told the person could not tell me on the phone. I would get a letter in the mail in a few days. Maddening.......Yes, I was approved on the initial try. I was very ill and depression was one of my diagnosis at the time. I have heard it helps to get approved on the first try.
  12. Thanks Shelley and Sherion for your replies. I have long term disabity through my last employer also. I am reviewed yearly for that. My last review was 8/2006. The paper work was started 4 months before that date. Rheum said I was disabled for any job and she did not feel I could do any job because of my illness. She had to fill out a paper and have supporting documentation. Then the company requested recods from all my doctors for the past year. I had to fill out several pages of paperwork. I know it is necessary to make sure you are really disabled. I knew I had nothing to worry about about but I still worried until I got the decision. If I can get approved yearly by my long term disability I am sure I will have no trouble with the SSDI review. Sarah
  13. I received SSD in 11/2004 on the first try. My award letter said I would be reviewed in 3 to 5 years. I would love to hear from anyone who has gone through the review process. What can I expect and has anybody been denied? Thanks, Sarah
  14. Janey Thanks for finding this. This is exactly what I was looking for. I have never heard of a rheumatologist using this scale. Mine always wrote down my symptoms. Glad to hear the Bosentan helps. Yes, this mild winter weather has been great. Hugs, Sarah
  15. I have read case studies where the progression of Raynaud's is rated in stages from 1-4. One being the least involvement and 4 being gangrene which could lead to amputation. Does anyone know who established these 4 criteria and exactly what each stage characterizes? Do doctors use these stages to rate the progression of your disease? My doctors never have. Sarah
  16. Sarahp


    I have Lupus and an overlap of limited Scleroderma. The rheumatologist I was seeing for 20 years said I was a MCTD with SLE and CREST. I have a high positive RNP-243 which is specific for MCTD. Rheum said my hands showed the characteristics of CREST about 10 years after my SLE diagnosis. New rheumatologist one year ago who is 30 says my diagnosis is SLE with an overlap of limited sceroderma. I also have antiphosholipid syndrome. Also have positive ds-DNA which is specific for Lupus. I have been a challenge to treat. I am on 9 meds presently and see rheumatologist and dermatologist often. Sarah
  17. Vee I want to tell you my experience with Rituxin infusions. I had two Rituxin infusions three weeks apart. This was one year ago. I have Lupus with an overlap of limited Scleroderma. I was being treated with oral cytoxin and went to another rheumatologist for a second opinion. I was having leg ulcers from antiphospholipd antibodies plus my high ANA 1:1280 and high dsDNA 1:320 plus other abnormal blood work made me a good candidate for Rituxin. The second rheumatologist was a lot more knowledgeable about the newer treatments and I switched to her. Best thing I ever did. The problem is that it is very expensive. It is considered off label for lupus. My insurance is a PPO and did cover it. One infusion cost about 12,000. Are you having it for RA? It is now covered for that if other drugs have been tried without success. But Rituxin is a mixed bag. It kills the B cells but in 6 months the B-cells come back. More Rituxin is needed or in my case Cellcept is being tried. It helped me greatly to get my CBC normal, ds-DNA is now 1:40. But I am on all the same medicines I was on before plus 2000mg Cellcept. Several people have used it in a Lupus forum I am on and are experiencing the same thing after 6 months. More Rituxin is needed or Cellcept. I had high hopes for a remission. So far I have not heard of that happening to anyone. I am a lot better but am still on 8 medicines. Sounds like you had quite a day at U of M. Sarah
  18. I am in Indiana and had no problem getting a copy of my Rheums records. I can't remember if I was charged. It was over a year ago. I called the patient account office and asked what I needed to do to obtain a copy of my records. I told her I was getting a second opinion and wanted as far back with as many test results as I could get. I told her I would pick them up and asked when would they have them ready. I was asked to come in and sign a form. It would take about a week to make copies. When I got the records I read everything and made copies of everything in my file. I discovered how illegible my rheumatologist's handwritten office visits were. It made me more determined than ever to switch to my new rheumatologist who has typewritten reports of each visit. Everyone should obtain a copy of their rheumatologist's records to see what is in your file. I was given a diagnosis for myositis, RA and deep depression that I was not aware I had. Glad you switched doctors. Sarah
  19. Obtaining an oxygenation reading on a finger has always been a problem when I have surgery. They end up getting the reading on my ear lobe. Next time I will mention that a forehead sensor should be used. I have read that these may not be accurate. Does any one know how accurate they are? Sarah
  20. Hi Mary It is great to see you. I don't post here often but I read the forum regularly. No, I am not on Viagra. I started on Coumadin and the Coumadin healed the ulcers on my legs and fingers and controlled the Raynauds. I am on Prednisone 10mg, Cellcept, Procardia ER, Vasotec, Plaquenil, Lipitor, Coumadin and Prevacid. I just got the OK to taper Prednisone 1mg a month. I had chemotherapy of Rituxin one year ago and it brought my blood levels back into the normal levels. Rheum is hoping the Cellcept will keep it that way. Sarah
  21. Luv M skiny tightening is worse when my hands are dry. I also have calcium deposits on my fingers confirmed by an x-ray. I can feel them. I feel that this also makes my hands tight. Piper, I have the bloodwork for Lupus. I was diagnosis 25 years ago. Also had the Raynaud's at that time. I have a positive ds-DnA which has been as high as 340. Ds-DNA is specific for Lupus. But I have always been told I fit the MCTD and the CREST category. Shiny skin on fingers with ulcers on fingers. I do not have a positive Scl-70. My current rheumatologist did tests and says my diagnosis is Lupus with overlaps of limited Systemic Scleroderma and antiphospholipid syndrome. The APS is makes my Raynaud's worse. I have had ulcers and needed to have surgery on two fingertips. Call me a Mixed Connective Tissue probably even though rheumatologist says the Lupus is my primary diagnosis. But rheumatologist says she has never seen anyone quite like me. I am on 8 different medicines to try and control the symptoms and progression of whatever I have. Sarah
  22. Thanks everyone for your replies. They were very informative. I will definetely bring up a PFT and echocardiogram with my rheumatologist. I have been seeing her every two months for Lupus related problems. She always listens to my heart and lungs and asks if I have been having any shortness of breath. I feel she is watching for heart and lung involvement. I have been taking Prevacid for several years. Two years ago I had a colonoscopy. At the time the GI doctor said I would need an endoscope down the road. That is another test I need to ask about. One of the reasons I have not been bringing up testing is because Medicaire health insurance just kicked in Nov. 1 after a two year wait after obtaining SSD. I am lucky in that it will be secondary with my husband's health insurance being primary. I plan to get thoroughly checked over after the first of 2007 when new deductables start. Sarah
  23. I have limited Scleroderma and Lupus. My rheumatologist has never mentioned having a PFT. Is it time for me to bring this up? I had a heart catherization 2 years ago and it did not show signs of PAH. I am 54 and was diagnosis with Raynaud's and Lupus 25 years ago. Four years ago was told I have limited. Is a PFT routinely done for limited? Those of you with limited what did you find when the test was done? Sarah
  24. I use to have a terrible time whith carpal tunnel when I was working. I was a librarian and constantly lifting heavy books and bins of books that could weigh 30 lbs. Several other people at work had problems with carpal tunnel so it was not just me. But what was different about mine was the swelling in my wrist that would be very visable. My rheumatologist tried different things--short term diuretics, NAISD, splints. I stopped this job 2 years ago and have not had any more problems. For me rest took care of the problem. Sarah
  25. Hi everyone I am a retired librarian. I live in Northern Indiana and am 54 years old. I have been married to the same man for 32 years. We have two girls. I am on several online forums. I love it. I have learned so much. I was diagnosed with Lupus and Raynaud's 25 years ago. I have always been told I fit the CREST pattern also. About 4 years ago I was given the limited Systemic Scleroderma diagnosis as well as APS. It is very nice to learn more about each of you. I will try to get a picture up soon. Sarah
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