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Posts posted by DBHYGRELL

  1. Hi,


    I keep getting new ones and I find it very frustrating. Do they ever stop showing up? Will I keep getting more and more of these spots? I have one on my cheek and several on my lips. Normally, they don't bother me, but I wonder if there is some sort of predictive value to them. Do they mean that your scleroderma is progressing if you keep getting them?


    Jennifer, so sorry about your T's. They stink. I hope you find a workable solution!




  2. Hi,


    Just wondering why you are having the surgery. What symptoms are/were you having? I hope this isn't too personal. I just want to understand the different aspects of everyone's disease.


    Thanks for sharing,


  3. Hi,


    I have been taking Revatio (viagra) for about a year. I take 20mg 3 times a day to prevent/monitor my mild PAH and for my Raynauds. My Raynauds can be very severe at times, but the Viagra helped so my body could heal my ulcers. Also, my PAH pressure dropped since being on it. My doctor did have to appeal the insurance company originally, but it worked fast and I pay $50 a month for 90 pills that run about $11 a pill. If you have PAH or Raynauds, I would highly recommend it!



  4. That is horrible. When I talked to a lawyer today he seemed to think I might have a case because parts or all of it are covered by medicare and medicaid. Otherwise you and I are in the same boat... which is totally unfair. Have you been working with Greg Dean?



  5. Hello,


    It's been awhile. Nonetheless, I was accepted for the ASIST trial, but have been denied insurance coverage. I am very angry about this situation and am doing everything I can think of to get the coverage. I am on the verge of losing my job because I feel awful and can't work. So two weeks ago I am diagnosis with Fibromyalgia. That makes sense, but doesn't make me feel better.


    On to the meat of the story...


    I want to go to the local media because I have been denied investigational or clinical trials by my insurance and I work for..... wait for it..... a university that touts itself as a research institution. Is this total hypocrisy or what!!!! Employees of a research institution don't get coverage for research. I am awaiting talking to a lawyer before contacting the media - don't want to lose my job. Do you think others will care about this? This is a major medical center where I work...


    Also, the medical personnel who performed the second look (brain freeze) was an oncologist. What does an oncologist know about Scleroderma....


    Thirdly, I have contacted my local representative to see if he can help.


    I just wanted to share my story to see if anyone had any ideas that could help me. I feel horrible and I just know that answer is a stem cell tx.


    I can pm my e-mail and associated documents if your are interested.


    Thanks for looking and sharing your opinion,


  6. I have the tingling also. I was told it was peripheral neuropathy. I tried neurontin, but I hated the side effects. I now take Lyrica and it works wonders. The tingling can be very disconcerting. I have even felt it in my face - such as my forehead. Boy was that creepy!



  7. Clinical trial of bone marrow transplant.


    Does anyone have any ideas how I can save my job? I am out of FMLA for the rolling year. I would like to maybe get into the program ASAP, but my FMLA does not go into effect again until February 7, 2007. My company does provide 6 months where they will pay for your insurance provided that you pay the premiums - ie: for me about $50/month. But after I talked to my manager they made it sound like I couldn't take a leave of absence and come back to my job? What are the rules for this? I want my job and my benefits.


    A different lady here was kept in her position on a leave for cancer for like 18 months before she quit/was forced to leave.


    My co-workers are willing to donate PTO until I get to the FMLA date of Feb 7, but I don't know how that would work?


    Just wondering what kind of thoughts or experiences you guys have had...




  8. Yes, this is the study that I am looking at... I am hoping to be evaluated very soon as my lungs/heart are getting worse. Trying to get the logistics worked out is very complicated and stressful. I am no longer completely worried about getting fired from work... so I am working with HR to figure out how to work out a leave.



  9. Actually, there is also a trial at Northwestern where you will get an allogeneic bone marrow transplant from a sibling - which is the one that I am interested in. I've been on Cytoxan and it isn't working... so that is why I am headed that direction.



  10. I am looking into Northwestern - at the Bone Marrow Transplant provided one of my sister's matches. I am hoping it is a go - but I want to get going right away because of my PFT's.


    Maybe we should e-mail -because I think we will be doing stuff at the same time.


    FYI- I did also read some problems about full body irradiation. Try researching it..


    Whatever you decide, good luck,


  11. Hello all,


    I am being evaluated for a bone marrow transplant at Northwestern. I was wondering if any of you have any advice or warnings etc. This is still new and I need to talk about it to digest it all... know what I mean :unsure:



  12. Hello,


    I am taking prilosec twice a day. And lately when I take my rx before bed I can feel the water - a few sips - coming back up. Anyhow, do you think I should try different drugs or is that just how it is with scleroderma?




  13. Hello all,


    I am a Clinical Laboratory Scientist and part of my job is drawing blood along with analyzing it. Everyone had excellent suggestions. Keeping your arm warm is important as well as being hydrated. Always have them use butterfly needles as they are smaller. Please try not to let them draw on the underside of your wrist - there are a lot of nerves there that can easily be damaged.


    A port is a wonderful idea - and where I work we are trained to draw from these lines once they have been accessed.


    It might be useful to tell the phlebotomist that you are a hard draw because your skin has scarred. We learn to look for veins and feel for them in specific spots. Having scarred skin makes this, obviously, much harder. Work with your phleb to find a good vein and tell him that in the past you have had a very hard time. Letting them know all of this in advance could help them and make you a "team". And lastly, sometimes after heating your arm let it hang down to let the blood "pool" into your veins so we can see or feel them easily.


    Also, I sometimes draw a vein of the thumb. It can hurt, but it is only one poke. For our pediatric patients we can have the doctors write a prescription for emula cream which I believe has lidocaine in it to help numb the skin.


    Hope some of this helps -


  14. Hello,


    Thank you to everyone who responded!!! I have been having a hard time lately and it is so easy to get overwhelmed. I talked to my sister, my doctor and my ex's mom and that has helped me see the light. My doctor validated my fears and anxieties- scleroderma is a very serious disease and it is scary not knowing what is going to happen. He also validated my idea of looking into clinical trials as I am refractory to medications so far.


    This disease has the strange ability to take over and change your perceptions.


    I have a plan - and it is modified, but I feel in control again. I am looking at the trial at Northwestern in Chicago and we will go from there. I am also keeping my eyes open for a new job that will be less stressful.


    Thanks again,


  15. Hello,


    I feel like this disease is ruining my life. I had plans and no I feel like those plans are a joke. For example, I planned on working my current job while attending school for nursing. I can't go to work all the time because I feel bad. Either I am hurting so bad or my stomach/bowels are acting up or I can't breathe well. Now, I have used up my FMLA leave for the year so I am worried about keeping my job. Without my job, I have no income or insurance. I am not sure how I would be able to work and go to school at the same time next year. If I don't do what I had been planning on, what do I do?


    Has anyone else ever felt their lives spiraling out of control like this? I don't feel like my family, friends or work really understand... what is happening to me. I have been already told by my manager to start looking for another job. Will I get better or worse? Who will help me? What about my bills?


    Out of control worrying,


  16. I am on cyclophosphamide - but I am expecting to be switched to cellcept soon if my pft's decline on Dec 21. I am not on oxygen, but I often have chest pains. I also feel weird when I am trying to sleep - like I can't breathe properly. I have been diagnosed since Feb 2006, and have probably had it about 3 years. I am terrified of O2 and what the future holds - but that is because I tend to overreact to things.


  17. I have pulmonary fibrosis that is progressing despite medication. My doctor said that 15% of patients with scleroderma and fibrosis do not respond to medication - is this true? I am very worried about this. Here are my pft's: my fvc is 69% and my dlco is 46% I also have mild pah and a stable pericardial effusion. What are you pft's so I have something to compare it to - if you don't mind sharing.




  18. Hello,


    I am Denelle and I am from Minnesota also. I was diagnosed with Diffuse in February of this year. I thought I knew what to expect, but then something happens and I am off kilter. ;) I have been trying to find a doctor that I respect and that I feel respects me... and it has been a challenge. I work at the University of Minnesota, Fairview hospital in the lab. I have also been accepted to nursing school, but have deferred for a year. I live by myself with 2 cats - Otis and Callie. I have learned to lean on my friends for support. I often feel others ignorance regarding the severity of this disease...


    It's nice to meet you all,