Guest guest Posted March 22, 2011 Report Share Posted March 22, 2011 Before Tysabri bp would run way low and pulse would get real fast. It has been better since starting-problem with changing positions sitting, laying down, standing. > > 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, > Kate > > > > > > ________________________________ > From: Sharon > To: MSersLife > Sent: Sun, March 20, 2011 9:43:38 PM > Subject: 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 > > > Sharon > This 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. > > > > > > > ________________________________ > From: " dscrider@... " > To: MSersLife > Sent: Sun, March 20, 2011 1:52:27 PM > Subject: Update > > > I am 46 and live in Missouri. The weather is teasing us with bits of > spring, 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 2010 > failed Rebif and Copaxone- 3 rounds of steroids 10days a pop IV 1000mgs. > Now on Tysabri x 4 months. The Tysabri is helping me in marvelous > ways-walking, energy, cognition, spasticity, vision, autonomic > dysfunction..... all is improving. But WOW I thought I had really > researched the Tysabri info but more and more comes out. I am not one to > experience much fear but I think the reality of " my Ms " is really > setting in. It is weird how people think I am walking and look good on > the outside so I must be fine. I have not told anyone but my husband > about the heart thing, the Tysabri things, havent even told him about > the fear I feel, weird because feeling so much better illustrates more > clearly how sick I was. So in using the Tysabri I felt I had nothing to > loose-but apparently the # with PML is rising, Tysabri research has been > halted for lack of participation or forward movement in studyand > stopping the drug causes severe relapses-which I cannot afford to > happen. > > Sherri > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2011 Report Share Posted March 22, 2011 Does your doctor know about the problem with changing positions, sitting, laying down and standing? Does your blood pressure drop when you do those things? Is it all the time or only at infusion time? hugs 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: Tue, March 22, 2011 3:16:59 PMSubject: Sherri....Re: Update Before Tysabri bp would run way low and pulse would get real fast. It has been better since starting-problem with changing positions sitting, laying down, standing. >> 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,> Kate> > > > > > ________________________________> > To: MSersLife > Sent: Sun, March 20, 2011 9:43:38 PM> Subject: 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> > > Sharon> This 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 PM> Subject: Update> > > I am 46 and live in Missouri. The weather is teasing us with bits of> spring, 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 2010> failed Rebif and Copaxone- 3 rounds of steroids 10days a pop IV 1000mgs.> Now on Tysabri x 4 months. The Tysabri is helping me in marvelous> ways-walking, energy, cognition, spasticity, vision, autonomic> dysfunction..... all is improving. But WOW I thought I had really> researched the Tysabri info but more and more comes out. I am not one to> experience much fear but I think the reality of "my Ms" is really> setting in. It is weird how people think I am walking and look good on> the outside so I must be fine. I have not told anyone but my husband> about the heart thing, the Tysabri things, havent even told him about> the fear I feel, weird because feeling so much better illustrates more> clearly how sick I was. So in using the Tysabri I felt I had nothing to> loose-but apparently the # with PML is rising, Tysabri research has been> halted for lack of participation or forward movement in studyand> stopping the drug causes severe relapses-which I cannot afford to> happen.> > Sherri> > > > > ------------------------------------> > Quote Link to comment Share on other sites More sharing options...
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