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tmgilbertpt

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About tmgilbertpt

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  1. When I was in physical therapy school I got a really, really really bad case of the flu. It was so severe that I actually suffered nerve damage in my arm as a result from the flu. I remember having to crawl to the bathroom because I was so week. About a year after this is when I first started showing signs of scleroderma. Makes you wonder. Tammy
  2. Hello. I am currently undergoing IV cytoxan for the second time. In 2005/2006 I was treated with 6 IV cytoxan chemo sessions. I started again on IV cytoxan last year and just finished my 6th chemo session. I was wondering if anyone had any insight to an optimal number of sessions. I know some of the research recommends 12 months. I was diagnosed with systemic scleroderma in 2002 and since have had lung, liver and heart involvement. I have yet to be in remission and recently had to stop working and apply for disability due to the gradual decline in my health. Thanks so much. Tammy
  3. tmgilbertpt

    Fibromyalgia

    Hello. I was diagnosed with systemic scleroderma in 2002. Recently my doctors have added fibromyalgia. Being in the medical community I encounter doctors who firmly believe in the condition known as fibromyalgia and others who totally oppose that such a condition exists. My pain doctor wonders why other doctors need to add the diagnosis of fibromyalgia when having scleroderma can account for all the intense body pain that I feel. As a physical therapist I still haven't decided on which side of the fence I lie. I do believe doctors give this diagnosis when they cannot explain or account for all the symptoms we may feel. I try not to get lost in the actual name of a diagnosis but instead focus on treating the symptoms I feel. tammy
  4. tmgilbertpt

    New Diagnosis - Polymyositis

    Hello, Can you tell me what tests your doctors used to diagnose the polymyositis? I have often believed I have this as well. My muscles, especially in my thighs hurt so much that even a light touch is very painful. I know this is not normal. And could you explain the treatment you are getting for this. Thanks so much, Tammy
  5. tmgilbertpt

    Tachycardia And Arrythmias?

    Hello, I had the increased heart rate (over 130) with just sitting down or laying in bed a few months ago. My pulmonary artery pressure was 30-35. Normal is below 25. My pulmonary doctor insisted my pressure was not high enough to cause my increased heart rate and was not due to pulmonary artery hypertension. But I convinced him to start treatment for it anyway. I have been taking Bosetan for the past 2 months and I cannot tell you how great I feel. No more increased heart rate, no more pounding in my chest, no more chest pain, no more lower leg swelling, and increased energy. Good luck!! Tammy
  6. tmgilbertpt

    Scleroderma And Tachycardia

    Hello everyone, This was my same exact question about 2 months ago. Back in September I was hospitalized for tachycardia, heart rate at 130 with doing absolutely nothing. I underwent numerous EKG's, blood work, angiogram for left and right heart catherization. My pulmonary artery pressure was found to be slightly elevated, indicated minimal pulmonary artery hypertension. Both my cardiologist and pulmonary doctor refused to believe that this was the cause of my increased heart rate. But I strongly disagreed, fought with both of them and my pulmonary MD agreed to start treatment with Bosentan. I have been on this for about a month now and my heart rate has come down to the 90's and I am feeling better with energy and less fatigue. I no longer have chest pain and palpitations. I have been previously treated with oral cyclophosphamide x 1 year and IV cyclophosphamide x 6 months for interstitial lung disease. As the others suggested I would demand EKG, echo of heart, pulmonary function test, CT scan of lungs if these have not already been done. Don't take no for an answer. good luck, Tammy
  7. tmgilbertpt

    Iv Problems

    I have the same problem with IV's. I had a port installed to receive IV cyclophosphamide. My port also came in handy when I had several admissions to the hospital where they needed to start an IV. I don't know if I would have survived without the port. Unfortunately my port stopped working and I had to have it removed. The doctor could not believe the amount of scar tissue that developed around it due to the scleroderma. I always ask for a butterfly needle when giving blood. I hate the look from the person taking my blood. Has anyone else ever had the problem of the technician telling you "this is like a butterfly needle". Unless they had our skin problems no one understands how painful a simple thing like giving blood can be. tammy
  8. tmgilbertpt

    Tracleer Questions

    Are any of you guys also taking Coumadin with the Tracleer? I was speaking with one of my patients who is on Coumadin and he described his stomach symptoms actually like what I have and his started with the Coumadin. So I am wondering if maybe this is it? Thanks for responding..good to hear from those who have had postive effects from the drug. Tammy
  9. tmgilbertpt

    Tracleer Questions

    I just recently started treatment with Tracleer, drug used for pulmonary hypertension. So far my side effects have been loss of appetite and pretty bad nasuea. Right now I am on 62.5 mg twice a day. To be on this dosage x 1month and then increasee to 125 mg 2x/day. I was wondering if anyone out there is on this medicine also and how they are tolerting it? And how long did it take before you felt better. Thanks, Tammy
  10. tmgilbertpt

    Terrible Terrible Pain!

    Hello, Sorry to hear about the terrible pain. I would suggest a consult with a good physical therapist (physiotherapist). I am a therapist - treatment may not get rid of all the pain but it should help alleviate some of it. Have you tried a fentayl pain patch - my internal medicine doctor put me on this because of the intense pain I was having all over and not getting relief with general pain medicine. I am so thankful for the patch for without it I wouldn't be able to work. Good luck, Tammy
  11. tmgilbertpt

    PAH Treatment And Coumadin

    Janey, I actually did some research on the coudamin used in the treatment of PAH. There were some studies done by the Mayo clinic that found patients who did use the coudamin in combination were found to live longer. There were a couple other drugs they use that were mentioned. I did not get a chance to read why though tammy
  12. Hello, I am a physical therapist so hopefully I can give you some insight here. You need to learn flexibility exercises for both upper and lower body. If you have loss of motion at any joint, esp the hands which is common in us, have the therapist teach you range of motion exercises. Learning diaphragmatic breathing is a good tool to have to help with pain and to aid in maintaining lung function. Simple strengthening exercises that work on posture and what is know as your core are very good in helping people with neck and back pain. If your pain is chronic, you can get set up with a home TENs unit. Most PT's don't know about sleroderma....things to mention to them are that you can overdo it if you exercise too much causing more problems. Unlike most folks, we shouldn't push past the pain or past exertion. Let them know if general fatigue is a problem....getting set up with a good cardiovascular routine (treadmill and bike) will actually help. let me know how it goes. Tammy, PT - diagnosed with systemic scleroderma '02
  13. tmgilbertpt

    PAH Treatment And Coumadin

    Hello, My pulmonary doctor is going to start me on treatment for PAH. I am not quite sure which drug I am going on - awaiting insurance approval. But he mentioned that I needed to be on coumadin while I am underoing treatment for PAH. Has any other MD's prescribed this for you guys getting treatment for PAH? THanks for your input. Tammy
  14. tmgilbertpt

    PAH And High Heart Rate

    Thanks Peanut for the reply. I do have one question for you. So even though your right heart cath did not show PAH at rest but only with exercise, they thought it appropriate to start treatment? I guess I am just getting reassurance that I am not making too much out of this and that my persuading my doctor to start treatment is the correct thing? Thanks again
  15. tmgilbertpt

    PAH And High Heart Rate

    Hello everyone, I was wondering if anyone out there has started treatment for pulmonary artery hypertension and if so, what were your symptoms and do you know what your artery pressure was. I recently had a right heart catherization and my pressure was 30 mmHg. (PAH is defined anything above 25 mmHg). I have been having a high heart rate from 100-130 beats/min just with sitting down activites, chest pain and palpitations. Also shortness of breath. I did have interstitial lung disease which was successfully treated with IV cyclophosphamide. My pulmonary doctor agreed to start treatment for PAH, even though he felt 99% sure my symptoms were not due to the PAH. I have cut out all caffeine and chocolate. On meds for anxiety and practice meditation also for this. I am a physical therapist so I have an active job. A national conference emphasized the importance of treating PAH early to help prevent/delay deterioration. Any thoughts/personal symptoms would be helpful . Thanks, Tammy
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