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Liver transplant head to toe pain

Posted by jtjourney @jtjourney, Jul 7 9:04am

I am 14 months post liver transplant. On tac and mico. I have occasional head to toe pain where everything hurts. It always starts in the morning and everything hurts, every joint, muscle, bone, skin - even my eyeballs!! It lasts 24 hours exactly and I'm completely out of commission during that time. This happens randomly, around once a month but can be every two weeks. I have to take pain meds for this. Anyone else experience this? I can go two months and it won't happen. I'm doing great otherwise, so if this is the only problem I have post transplant, I'll take it. My transplant team just shrugs their shoulders, they think it's my immune system thinking something is wrong and sends troops out to attack when there is nothing wrong. The doctors don't seem concerned. Thoughts?

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stolson1 | @stolson1 | Jul 18 4:31am

I am six years out from my liver transplant. Are you on magnesium ? When my tacromilis is at a higher count I notice my joints can hurt some or I get terrible headaches. None of this is a complaint by any means I am very grateful. I just have noticed some changes-

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jtjourney | @jtjourney | Jul 18 8:32am
In reply to @stolson1 "I am six years out from my liver transplant. Are you on magnesium ? When my..." + (show)
@stolson1

I am six years out from my liver transplant. Are you on magnesium ? When my tacromilis is at a higher count I notice my joints can hurt some or I get terrible headaches. None of this is a complaint by any means I am very grateful. I just have noticed some changes-

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@stolson1 thank you for your reply. Yes, I am on magnesium and my tac has been high. For the better part of the year it's been very stable. I had to go on Prednisone as my myco was wreaking havoc on my WBC count, then when things were back to normal they gradually took me off Prednisone and restarted myco with no problem. But the last two months my tac has been jumping between 3.3 to 11.4! My transplant doctor has been adjusting the dosage accordingly, but I'm surprised it's jumping around and not yet stable again. And when my tac is high is when my joints hurt the most. As you, I'm not complaining, just wondering what is going on. I have an appt with my transplant doctor at the end of the month to get more answers, hopefully.

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