| Author |
Message |
ellmo
Member
Username: Ellmo
Post Number: 2
Registered: 08-2014
| | Posted on Thursday, August 28, 2014 - 01:26 am: | 
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I am just over 6 months post heart transplant and am having al ot of side effects from tacrolimus-ongoing insomnia,tremor,pins and needles and burning in back legs and arms.My transplant doctors have reduced tacro by a third ,level had been 7 but a week later no change.Has anyone experienced similar symptoms or recall if they had dose reduced/ how long side effects would take to settle?I don't go back to the centre for another 3 weeks.I gather from that they expect change to be slow.They looked at change to cyclosporin which worries me too but that's just because it's another new drug.Luckily biopsies zero or low grade rejection.Also on Myco and pred.Thanks for your words of advice as the whole thing is taking its toll |
Jack
Forum Leader
Username: Johnhollenbach56
Post Number: 625
Registered: 12-2009
| | Posted on Thursday, August 28, 2014 - 07:38 am: |
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Good morning Ellmo, during the first year your levels are at their highest, sounds as though your center has started to taper you down, as they do your side effects will lessen, I retained the shakes and insomnia until I was switched from Prograf to Rapamune (which can have its own set of side effects), however, keep in mind everyone differs to some extent with their reaction (or lack of reaction) to any drug or combo of drugs, it can take a while to adjust the meds to the correct level that will prevent rejection and minimize the side effects. If the insomnia persists speak to your team their are options available (sleep aids, sleep studies . . . ) My center has a phone number to call after hours to speak to the 'on call' team with problems.
Jack Hollenbach
Received double lung transplant August 2 & 3, 2007 for COPD at UCSD Thornton Hospital, San Diego, CA
Live each day to your fullest, for it is a gift to be treasured |
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