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About sadie20

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  1. Hey guys. I brought this topic up a couple of days ago, but am hoping to get additional response. I will be going to my rheumatologist this week to try to convince her to write a note stating I can return to work as a nurse in the hospital setting. In December, she convinced me I should never work with acutely ill people due to being on Cellcept and should "tell human resources I need an administrative job". I need to stay with the hospital I am working for as I have already earned education benefits. I guess at the time, I just accepted her opinion as the norm for immunosuppressed people
  2. Steph-Anne, I urge you to ask your Dr. to order OT. I also ahd selling and the beginning of hand curling. I also have flexability issues(becoming difficult to raise arms with curling iron, etc. I had her order "PT/OT - consult and treat". Incase you don't know PT is physical therapy and OT is occupational therapy. Apparently, OT is any problem from the elbow down and also for ADL'S(activities of daily living - such as if you had problems dressing, bathing, etc. I was primarily interested in learning exercises to keep my hand flexible and exercises to increase my flexibility as I assume
  3. I also have motility problems that seem to vary. I have a bad reflux problem. Nexium and eating small amounts has helped. Sometimes I have no problem, but other times I becomes distended from drinking a cup of coffee or water and it just sits there. I need to have some type of snack in the evening as I am diabetic. It has been trial and error to figure out what will "move along" before I lay down at night.
  4. Barbara, How cool!! Education of Raynauds, Sclero is the key. I wish I could listen.
  5. Thanks all for your info..I will share with my doctor and hope she will agree. If anyone else has any experience, please share. Sclerster - what a cool study!! I look forward to hearing how it goes.
  6. ssakar, I agree with what has already been said. I also took the advise from someone in my support group which was to start a notebook and keep copies of all my labs, tests, etc. I take this with me to all my appts. This means I have to be proactive and a couple of days after I have had a test, etc. call and tell the office I intend to pick up a copy(if you live too far, have them send a copy). Once your primary care physician office knows you expect this, you won't have a problem. I'm sure I'm not one of their favorite patients(office girls), but I really don't care. I'm always very ni
  7. Lori, Seems like I've heard good things about IVIG here - good response. I asked my doctor about it and she says I need to try the Cellcept for 6 months first. I know she is the expert, but the thought of "waiting" 6 months while this disease may be progressing is frightening. I see there are several folks here on Cellcept and may don't seem to be improving. As for the topic, the autoimmune diseases are all so unpredictable - especially sclero. This is the most frustrating part of this illness. When I was first diagnosed last fall, I came to the internet to educate myself. I was horri
  8. For anyone with any knowledge or experience...I was a nurse on a telemetry/stepdown unit. I ahve not worked for 5 months due to the way my sclero presented itself(shortness of breath, pain, etc.). I am now on Cellcept(yea! my liver enzymes are OK with it). I NEED to go ,back to work and am phjysically ready at this time. The problem is this: My PC doctor feels it is ok and says I just need to use appropriate precautions(for infections, etc). He says he has transplant pts. on immunosuppressive drugs that continue to work in the hospital setting without a problem. On the oither hand, my rhe
  9. For Lori, Just wondering what type of Sclero and symptoms does your hubby have to be get IV Cytoxan? Thanks
  10. Thanks Shelley & All, It seems my treatment may be dictated by whatever my liver will tolerate. After a liver bx and visit to a liver specialist, she told me she doesn't beleive I have AIH or Cirrhosis, but for whatever reason, my liver does not seem to detoxify meds well. So I had to come off all meds (only take a few) and then got a baseline and have been adding back meds every 2 weeks and checking enzymes. I started with Nexium which (thank goodness) was OK. Then I resumed Cellcept and today I should find out what my enzyme response is. Although my skin thickening, inflammation ha
  11. Is anyone out there taking penacillimine? I know it is no longer considered frontline treatment, but 2 women are taking it in my support group (have taken it for several years) and swear it works for them. I just got a copy of my liver enzymes today and found out that I am not going to be able to take Cellcept..they elevated just like with Imuran. I have an appointment with my rheumatologist next week to discuss my treatment plan. Does anyone have any experience with this or have any suggestions?
  12. Hi Jen, First of all - congrats!! I agree with Jennifer totally. I rather doubt there is a reason each physician won't sign the form, probably no one wants to be accountable. I am a nurse, but until I embarked on the "sclero dance" last fall with an assortment of different specialists, blood tests, MRI's, EGD's, etc., I had no idea how the medical field has really changed. Patients used to be able to depend upon their doctors to "take care of them" ie. sign forms, call with test/lab results, etc. Those days are OVER!! Each of us needs to advocate our own care and many times the care of
  13. Sakar, I beleive Medicaid coverage on drugs varies from state to state. You should be able to go online and get a list of the covered drugs. I would then make several copies and take them with you to various Dr. Appts..have them place a copy on your chart. I would also not be shy in asking for samples ifrom every physician. Even if your GI Dr. ordered Protonix, ask your PC, cardiologist, etc for samples. Beleive me, the drug reps are VERY generous with these types of medications. I have a friend on Medicaid with some serious health issues and these are things she does. Good Luck.
  14. Thanks all...as for the decision to shovel snow(not the brightest thing I've ever done), I guess I have to admit that I have not totally accepted my limitations yet. My upper and lower extremities were very weak when I was first diagnosed last fall. Over the last 2 months I've had PT for strenthening and flexability and have made myself continue the exercises on a daily basis as I need to try and go back to work. I've noticed a real improvement. Sure wish I were in Florida as we just had a snow/ice storm here in Ohio..No more shoveling for me!!
  15. Hi all. I have a few questions for those of you with more knowledge/experience with this disease. Does the actual ANA# in sclero have any indication of severity? Also, i know that muscular/skeletal problems accompany sclero, but are shoulder problems really prevelent? Last week I was feeling so well that I shoveled snow. I felt the general aches, etc the day of and the day after. For the past 3 days though, I have had searing pain across my mid arm with particlar movements. I am not allowed to take anti-inflams due to elevated liver enyzmes, so have an appt to get a DR. to at least orde
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