Mine were from the Tacrolimus. I was on three and three and tremored like crazy! I’m now on two and two and they are almost gone. Med was reduced about six weeks ago. I am 16 months post and was transplanted at VCU in Richmond Virginia.
I have the tremors in my hands sometimes, but what really bothers me is the whole body shakes that I get after bouts of dizziness. They only last about a minute and then subside. However, I have spilled things and broke things (such as a bottle of hot sauce due to the shakes). Does anyone else experience them?
@chickytina, As I read your comment about feeling like your whole body is shaking, I am wondering whether you are a coffee drinker? I discovered that if I limit myself to one cup of coffee in the morning, I am fine. I had forgotten this, and while my husband and I were on vacation last month, those constant coffee refills in breakfast restaurants set my whole body into an inside shakiness and quivering. Once I remembered that that had happened in the past, I cut back on the breakfast coffee, and I felt normal again. Just an idea that I wanted to share.
As for the dizziness, how is your blood pressure?
And does it make a difference whether you take your meds with or without food? Some members have talked about that in the past. Maybe someone will add their experience here, too.
I have the shakes, dreadful.hand issues but sometimes it feels like my innards and brain is shaking as well. The changed me from Adaport to Adagraf but it is still happening. I also had a nasty reaction to Mycophenolate which has now been replaced by prendisilone (Sorry think I have spelt that wrong).
The shakes are quite annoying sometimes and I do find my self apologising for them quite alot.
@chickytina, As I read your comment about feeling like your whole body is shaking, I am wondering whether you are a coffee drinker? I discovered that if I limit myself to one cup of coffee in the morning, I am fine. I had forgotten this, and while my husband and I were on vacation last month, those constant coffee refills in breakfast restaurants set my whole body into an inside shakiness and quivering. Once I remembered that that had happened in the past, I cut back on the breakfast coffee, and I felt normal again. Just an idea that I wanted to share.
As for the dizziness, how is your blood pressure?
And does it make a difference whether you take your meds with or without food? Some members have talked about that in the past. Maybe someone will add their experience here, too.
I usually don't have any caffeine (had issues many years ago with caffeine deposits in my breasts), but I did last month when on vacation and had 2 cups. So I know the caffeine effect, but what I am experiencing is increasing lately. It usually happens after I get up and walk. I get a dizzy feeling and then the whole body shakes. I take my meds with food usually, so I don't think that is the issue.
I have the tremors in my hands sometimes, but what really bothers me is the whole body shakes that I get after bouts of dizziness. They only last about a minute and then subside. However, I have spilled things and broke things (such as a bottle of hot sauce due to the shakes). Does anyone else experience them?
Yes, I have had shakes since starting Tacrolimus at the time of transplant 1 year ago, with tacro levels always going up and then down. This monitoringis stressful as if levels go too high I have to lower tacro (envarsus XR) dose and if levels are too low, I have to increase doses. Increasing causes more shaking and anxiety. But I was told by my doc that changing to another med could cause possible kidney rejection. I said NO! Metoprolol helps lessen the shakes per my cardiologist and also an accepted lavender supplement called Calm Aid by Nature's Way helps too. These were approved by my TC. I just pray that I can manage these ups and downs and that is smoothes out as I am at one year. Stressful. I also take meds for anxiety and depression which help too. But grateful for kidney. BB
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Thankful that my doctor reduced my Tac again yesterday. I’m now on two and one. Prayerfully my tremors will decrease even more.
@chickytina, As I read your comment about feeling like your whole body is shaking, I am wondering whether you are a coffee drinker? I discovered that if I limit myself to one cup of coffee in the morning, I am fine. I had forgotten this, and while my husband and I were on vacation last month, those constant coffee refills in breakfast restaurants set my whole body into an inside shakiness and quivering. Once I remembered that that had happened in the past, I cut back on the breakfast coffee, and I felt normal again. Just an idea that I wanted to share.
As for the dizziness, how is your blood pressure?
And does it make a difference whether you take your meds with or without food? Some members have talked about that in the past. Maybe someone will add their experience here, too.
I have the shakes, dreadful.hand issues but sometimes it feels like my innards and brain is shaking as well. The changed me from Adaport to Adagraf but it is still happening. I also had a nasty reaction to Mycophenolate which has now been replaced by prendisilone (Sorry think I have spelt that wrong).
The shakes are quite annoying sometimes and I do find my self apologising for them quite alot.
I usually don't have any caffeine (had issues many years ago with caffeine deposits in my breasts), but I did last month when on vacation and had 2 cups. So I know the caffeine effect, but what I am experiencing is increasing lately. It usually happens after I get up and walk. I get a dizzy feeling and then the whole body shakes. I take my meds with food usually, so I don't think that is the issue.
Yes, I have had shakes since starting Tacrolimus at the time of transplant 1 year ago, with tacro levels always going up and then down. This monitoringis stressful as if levels go too high I have to lower tacro (envarsus XR) dose and if levels are too low, I have to increase doses. Increasing causes more shaking and anxiety. But I was told by my doc that changing to another med could cause possible kidney rejection. I said NO! Metoprolol helps lessen the shakes per my cardiologist and also an accepted lavender supplement called Calm Aid by Nature's Way helps too. These were approved by my TC. I just pray that I can manage these ups and downs and that is smoothes out as I am at one year. Stressful. I also take meds for anxiety and depression which help too. But grateful for kidney. BB