If anyone has any information on this I would trruly appreciate it!  I have not seen my new post tranpslant nephrologist yet - only the surgeon and my nurse coordinator.  I am still having a difficult time with the emotions with Prednisone.  So much so that my relationships are suffering from it.  Crying very easily.  I am taking something for mood disorders which is helping a little bit with the mood swings, but the depression and crying and being extra sensitive and negative - i cannot shake it.  I will not get to discuss this with my new nephrologists until around the 20th or 20 something!  From your experience, is it usually keeping one on Prograf instead of weaning off of it if you do not take Prednisone?  Thank you for any information!  - Amanda

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  • I looked.around s found only 1 posibul drug forgot name you can gobgle it.

    Also they might give you something for the side effects. Question have you called them and tell them what's going on they might reduce your does.

    You could also go to a pharmacy and talk.

    Ptograft is nothing like prednisone and most likely you take some form of these for life.



    • Yes, i am working with the doctors.  I tried to copy and paste my response to keike in this thread/discussion, but it won't let me.  If you can look below and find her response to me and then my long response to her you will understand a little better what is going on.  It is kind of complicated.  Basically there is pretty much no alternative to prednisone unless it is another cortico-steroid.  They all act pretty much the same way.  I can take an anti depressant if I want, but I really want to avoid having to take another drug.  I might have to do that, though.  My choices are this:  They wean me off prograf at nine months to a year.  They keep me on belatacept, cellcept and prednisone for rest of life.  Or - they get me off of prednisone but keep me on cellcept, belatacept, and prograf for the rest of my life.  So I have to decide if I want to stay on prednisone forever or get off of prograf forever.  A lot of people would choose to get off of prograf.  But a lot of people hate prednisone so much they would choose to get off of prednisone instead.  Prograf can be harmful to the kidneys so that is why the center is trying to use belatacept instead.  But my center believes that a daily dose of prednisone is the best way to go to try and prevent a rejection episode rather than treat you for a rejection episode with high doses of prednisone.  Other centers feel that a daily dose of prednisone may not be worth the trouble because of all the side effects they cause and the low dose the give you daily may be so low that they don't think it really does that much to actually prevent a rejection so they just don't give it.

      • I now take 5mg a day something else as time goes by side effects lessen or go away 

      • but thank you so much for your help and concern with this!  not sure if i said that or not but want to make sure you know I really appreciate you!

  • Boy I don't know if this will help I had a del lung transplant 9 years ago I have got my prednisone dose lowered to 5 mg a day. And will have to take this my whole life. As far as I know their are other drugs than prograft and your most likely have to take one of them the rest of your life. On lung transplant they like to do them at a point ware they figure you only have 2 years to live. So in my case my tx has already given my 8 more years than I would of had.

    If you experience rejection they treat you high doses of soulmederol not spelled right whuch is like liquid prednisone. 

    After 9 years I have had dosages of meds changed mostly lowered but never stoped.

    Dident you have classes on the drugs used after transplant and don't you have a notebook they gave you explaining thes drugs if not I would ask for one.

    In my clinic you had to take thes classes 

    • hey - if you can, read the replay i wrote to keike below.  it explains a lot more about what the situation with my drugs is.  thanks!

    • i do wish they had made me take classes before the transplant.  none were given or required as far as i can tell you.  i do have a notebook on drugs that I take but it doesn't inform me of which drugs you can take in place of other drugs if you cannot tolerate certain ones.  i have since spoken with the dr.'s, etc. and there are differences in centers treatment options/drug therapies.  i was asking people on here to try to find out what all peiople on here have taken or are currently taking to see what has worked for others and what my other options might be.  yes, i do hope i don't reject or have an episode and have to take the liquid prednisone.  you get that in the hospital right after your transplant at seriously high doses and it sucked big time as your entire body is so sore you feel like you have been hit by a train.  i am glad to hear you are doing so well and your life has been prolonged with your transplant!  i will agree that kidneys and lungs are quite different in that we have dialysis as an alternative to a transplant if we wish to continue that route or if the transplant is not an option or it fails whereas you don't have much of an option when your dr. is telling you that you may only have two years to live.  in that situation you never second guess your decision or worry about the drugs too much, at least I would assume you don't worry about drugs so much.  thank you so muhc for the info and i hope you continue to thrive!!!!

      • You may have answered your own question about why you weren't "prepared" before getting transplanted. Preparing for side effects that you may not experience is futile. Who would  sign on for medications that would make your hair fall out, or cause your hands to shake like you were in a quake, or ... Who would ever get a Tx? This is where faith comes in, be it faith in your team to deal with issues as they arise or in yourself to overcome all, and faith in a higher being to see you through. While I push for answers, I must prepare myself for the answers I get, always with the knowledge of what the alternative would be.

        New treatments and medications appear constantly, though we are a very specialized group and there may be less funds for the research and development that produces these, given recent government directives and limited profit potential for drug makers.

        It is my hope you find the most tolerable combination available to enjoy a healthy, long life.

        • thank you!  i hope you will enjoy a long and healthy life, too!  both of us!  all of us!

        • yes.  you are very correct!  i didn't respond to him very clearly or efficiently, but that is what I was going to say!  that had i known about the side effects i 'might' not have signed on,  but i probably would have signed on regardless.  i guess i cannot say for sure, but the alternative at the time - dialysis - did seem like a quality of life issue to me.  granted i had a venous catheter and then tried p.d. with two different cath operations so it was a frustrating time.  i would have finally gotten a fistula and i think i would have gotten more used to it and more comfortable with it.  i was only told of the possible mental health side effects at the pre-op for the transplant and it did really make me think at that point - and those were the only side effects they really told me about.  I weighed the options and since I knew how many people out there wished they could get a kidney I decided it was the best way to go.  I did meet a man who told me he did not want a transplant and i was shocked.  he had been on p.d. for years and years.  he explained it was the drug costs and risks involved mostly and that some people die from a transplant!  that really made me think for a second.  i did the research on the chances of dying during the operation or after from transplant and it seemed worth the risk to try for me.  i do think that since we have an alternative to a transplant it is more of a choice rather than someone who has failing lungs and no choice really.  however, you don't know how long you can live on dialysis either.  i decided that I would go the kidney route and i am still glad that i did.  you are aware of the emotional side effects from the prednisone and possibly the prograf, and probably a bit of just the stress of the adjustment period afterwards that i have experienced.  i have been trying to get better and researching my options and i am hoping that i have turned a corner when it comes to stressing out and feeling guilty about things.  i have been feeling a good bit better emotionally the past ... almost a week now which is really promising.  I hope it lasts and it is not a placebo effect from working out a little more!  i have been feeling a lot more gratitude recently.  I guess when you are depressed or anxious it can be hard to think in terms of gratitude because you have such a negative outlook and your perception of things are so out of whack.  So I am hoping for the best and trying to relax.  I wrote a response to keike below.  Don't know if you read that, but it was the answer to her and my question about why do i have to take the prednisone if i am feeling so badly on it.  I just want to say thank you so much for being supportive to me and everyone else on here.  I am very happy that I found this site as i was feeling very alone in that no one around me was going through the same things and they didn't understand.  Thank you for also being so inspirational, motivating, and encouraging!

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