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Old 07-12-2008, 11:55 AM
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erinhermes erinhermes is offline
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Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
15 yr Member
erinhermes erinhermes is offline
Senior Member
erinhermes's Avatar
 
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
15 yr Member
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Thanks for responding! THis site is a huge life saver! It makes me feel like I'm not alone in this, which is HUGE for me. Now how long did it take to wean you down to 15 mg. every other day? How did you feel when you were being weaned? I tried about a month ago, but felt "unplugged" mid-day and had to stay @ my 60 mg. , but my doctor said that it was common and we may have to "bump it up" to 80 mg. sometimes.......I don't know how common that practice is, but I do know that he really is the best so I guess I shouldn't question him. My hematologist/oncologist was really surprised the other day when I told him I was still on 60 mg. per day. I'm still anemic, so I go in every month. This MG really threw me for a loop. When I was finally admitted to the ICU everything started shutting down on me - it was really scary. I'd wake up with a stethoscope on my chest and a doctor saying I may have to have a pacemaker (I'm 34), I was told I had hundreds of "spots" on my lungs, and was given that awful bone marrow test - that one really hurt - and that was just the beginning. I feel much better now, and am praying daily for remission and I do know how truly blessed and lucky I am, but just get scared sometimes. It just all happened soooooo fast! I mean, I was diagnosed on March 6th and had surgery on April 22 - it made my head spin! Though in retrospect I should have realized how sick I was, but was told by many "specialists" that it was TMJ, or my teeth, or sinuses......thank God for Dr. Ibrahim - he diagnosed me in about 5 min.and started me on Mestinon that day. I thought he was being dramatic, but looking back now I can see how truly sick I was THEN!!!!!! Take care!


Quote:
Originally Posted by redtail View Post
Hi Erin

welcome to the forum!!
I was diagnosed about 6 years ago, and have been on steroids since then, varying from 60mg daily, and now down to 15mg alternate days, am also on cellcept.
I have monthly bloodtest, and have done for all those years. I dont think I have ever had a problem, except 2 months ago, when my friendly phlebotomist put the needle in my right arm, the pain was HUGE!! The same lady has been doing it for ages, so no problems there, we decided we would stick to the left arm in future.
Sorry I can't be of any help.
take care, and hope to see you round here in the future, its a great place!!
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