I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Chris on November 28, 2010, 10:04:44 PM
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Since my hospitalization in Septembe and a bunch of med changes, I am on 5 mg of Prednisone now on top of Rapamune and Prograf. I get headaches on one side of the brain now that last for quite some time. Anyone else get these? I have brought it up to my transplant center, but didn't seem ed concerned about it. Told hem about memory lapses that have gotten worse since the hospitalization so they sent me to a nuerobehaviorist to test memory function and performes some scans. To me it's simple, takeme of one drug to find out if that is the one causing it. There's only 4 new meds to try. Vision has gotten worse to since September, but of course have to see another doctor for that which is Monday to get all bug eyed to see inside.
On the plus side, physical therapy is done for a month, so the break won't last long.
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Vision issues can be caused indirectly by prednisone. Since it causes fluid gain, some of it can go to the optic nerve and cause vision issues. High doses of prednisone in my early teens caused the cataracts that I've been dealing with since my early 20s. I don't think 5mg a day would do a whole lot, though. I don't know the side effects of rapamune or prograf, so those could be culprits as well. If the only thing that has changed since you started having problems, than it is most likely the meds. It's hard to get doctors to get that. Keep pointing it out to them.
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That's interesting. Gregory is still on 20mg a day of prednisolone, (they raised it from 10mg to 100mg a day, then 40mg a day while he fought off the PCP pneumonia) and he's been having eye problems and cracking headaches too. He gets the headaches at night, has had puffy ankles and puffy eyes, and some mornings he has photo-sensitivity: can't see in the light. I've mentioned it to two different renal docs at the renal clinic (he still goes in weekly for checkups) and asked if it was the Bactrim (photo-sensitivity is listed as a side effect of Bactrim). They both said, "it won't be the Bactrim". They didn't seem worried about it. HOpefully they will reduce the preddies tomorrow, I must remember to ask about it specifically!
When he was on 100mg a day he had the shakes something shocking and was grumpy as an old ##$$ as well.
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Boy, do I love all of this "You're in tremendous pain, but we're not concerned about it!" :sarcasm;
Headaches were a constant fact in my childhood. Tylenol usually helped, but sometimes not. Headaches are one of those hopelessly general symptoms that something is wrong. I think you're right, Chris. They should do some investigating and try eliminating certain drugs to find the cause. I don't understand the Rapamune and Prograf. I went through the med-switch discussion with the surgeon and Rapamune was discussed as a substitute for Prograf. I thought you could not tolerate Prograf any longer?
The good news is that my headaches eventually subsided, and in the end seemed to be stress-triggered. Perhaps you just need a bit of time to adjust to the combination.
I am sorry you are in pain and dealing with all of these hassles! :(
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Cariad, it was the CellCept/ Myfortic I can not tolerate anymore. The meds are what they put me on, I didn't have much of a say. At the time I didn't much care as long as I got better in the hospital.
I do not have the puffyness or munchies with the prednisone either.
Went to opthalmologist today and eye pressure is above normal in my good eye, but does not show signs of glaucoma. Howeer I am getting more test on that eye Thursday to see if there is other damage and get in touch with my doctors about what is going on with vision. Other eye pressure is normal though, but doesn't much matter since I can't see out of it anyway.
As for the headaches, I don't take anything, I don't want to take another pill, don't want to, and don't feel the need for it yet since I have been in worse circumstances of pain
I'll call the doctors tomorrow to update them what is going on again.