texasmom59
10-17-2008, 12:12 AM
Anybody out there with problems with immunosuppresive drugs on the long term? I had a liver transplant 16 years ago.
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feelbad
10-17-2008, 10:44 PM
just what types of problems are you now having? my son had a liver Tx back in 2000 and so far so good. i really don;t think he has had any real issues with the meds themselves yet,but you never know either ya know? what exactly are you having to take? Marcia
texasmom59
10-19-2008, 07:59 PM
just what types of problems are you now having? my son had a liver Tx back in 2000 and so far so good. i really don;t think he has had any real issues with the meds themselves yet,but you never know either ya know? what exactly are you having to take? Marcia
The first 12 years were great. I could go anywhere and do what I want. Did not go back to my job as an accountant as it was to many hours in a hostile environment (to many people and germs around). But I was doing good. The past 3 or so years have been gradually more difficult as I have almost no immune system left and get infection so easily. I stay home most of the time and avoid theaters, concert halls, shopping malls, grocery stores, and public places. This year I have had three epidosdes with 2 hospitalizations, one session of 12 days at the Infusion Center getting IV's every morning of antibodiacs and fluids. My kidneys are very touchy and I get hydrated easily and then the creatine number goes up. Don't mind staying home with my quilting projects and books to read. My husband (the last of the good ones!) is retired and home with me and supports me in many ways. I take 150 mg of cyclosporine twice daily, 5 mg of prednisolone, iron, calcium, blood pressure meds, and the usual vitamins. I am anemic and very weary and can sleep a lot. Have muscle spasms in my back right now as they tell me the cyclosporine has damaged my muscles. Also have arthritis and have had 4 hip replacements over the last 30 years. The aching and tiredness gets to me sometime. But I think it has reached that anything I complain about is caused by the cyclosporine. Or it's a good excuse for the doctors to brush me off. This is too long!
The first 12 years were great. I could go anywhere and do what I want. Did not go back to my job as an accountant as it was to many hours in a hostile environment (to many people and germs around). But I was doing good. The past 3 or so years have been gradually more difficult as I have almost no immune system left and get infection so easily. I stay home most of the time and avoid theaters, concert halls, shopping malls, grocery stores, and public places. This year I have had three epidosdes with 2 hospitalizations, one session of 12 days at the Infusion Center getting IV's every morning of antibodiacs and fluids. My kidneys are very touchy and I get hydrated easily and then the creatine number goes up. Don't mind staying home with my quilting projects and books to read. My husband (the last of the good ones!) is retired and home with me and supports me in many ways. I take 150 mg of cyclosporine twice daily, 5 mg of prednisolone, iron, calcium, blood pressure meds, and the usual vitamins. I am anemic and very weary and can sleep a lot. Have muscle spasms in my back right now as they tell me the cyclosporine has damaged my muscles. Also have arthritis and have had 4 hip replacements over the last 30 years. The aching and tiredness gets to me sometime. But I think it has reached that anything I complain about is caused by the cyclosporine. Or it's a good excuse for the doctors to brush me off. This is too long!
feelbad
10-20-2008, 12:05 PM
actually i am kind of suprised they have you onthe cyclo for an actual liver tx. thats usually more for kidney tx. my sons main anti R med is prograf? this is what he has been on,along with the same pred,5mgs,as you since day one. maybe they could try switching to this instead? its worth asking about. it was a newer tx anti rejection med that i do think came out after your Tx was actually done. unbelieveably,even tho my son is very much immunosuppressed,when it comes to getting sick,he is not the one who usually gets the crap,its me or my hubby or our other son. he has maintained perfect numbers all thru out his post Tx using the prograf. just something that may actually work for you and be a better choice? just a suggestion. like i mentioned above,the cyclo is usually more of a kidney Tx med vs liver. i would simply discuss possible changes to your anti rejection meds with your doc. it could be a much better choice with less side effects and still give you the immunosuppression you need. good luck to you,if you have any other questions,just hollar,K? Marcia