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Sarahp

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About Sarahp

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  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. New FDA cellcept black box warning

    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. Hard Boiled Eggs

    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. Nitroglycerin For Raynaud's

    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. Nitroglycerin For Raynaud's

    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. How Long Have You Been On Cellcept?

    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. Raynauds

    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. Being Reviewed After Receiving Ssd

    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. Are There Stages Of Raynaud's?

    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
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