Guest guest Posted March 21, 2011 Report Share Posted March 21, 2011 I'm not quite certain what you mean about the 'heart thing', but when I was on Tysabri, I'd have my BP drop really low--like the top # was from 60-80, and I would get heart palpitations. I would take Benadryl as ordered by the doc, as they thought it was an allergic reaction of sorts.Is that what you mean?blessings, Sherri,KateTo: MSersLife Sent: Sun, March 20, 2011 9:43:38 PMSubject: Sherri....Re: Update Have you told your Tysabri infusion folks and your neuro about the heart thing???? If not ---do so immediately!! Tysabri is a wonder drug when it helps people with the physical symptoms like it has for you. But it isn't a drug to take lightly. big hugs to you Sherri SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Sun, March 20, 2011 1:52:27 PMSubject: Update I am 46 and live in Missouri. The weather is teasing us with bits ofspring, of course with spring comes rain, with rain comes +pain.......My MS is R/R and has been quite resistant to treatment. Dx'd May 2010failed Rebif and Copaxone- 3 rounds of steroids 10days a pop IV 1000mgs.Now on Tysabri x 4 months. The Tysabri is helping me in marvelousways-walking, energy, cognition, spasticity, vision, autonomicdysfunction..... all is improving. But WOW I thought I had reallyresearched the Tysabri info but more and more comes out. I am not one toexperience much fear but I think the reality of "my Ms" is reallysetting in. It is weird how people think I am walking and look good onthe outside so I must be fine. I have not told anyone but my husbandabout the heart thing, the Tysabri things, havent even told him aboutthe fear I feel, weird because feeling so much better illustrates moreclearly how sick I was. So in using the Tysabri I felt I had nothing toloose-but apparently the # with PML is rising, Tysabri research has beenhalted for lack of participation or forward movement in studyandstopping the drug causes severe relapses-which I cannot afford tohappen.Sherri------------------------------------ Quote Link to comment Share on other sites More sharing options...
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