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Hi everyone,

I have just joined this group and would love to know your experiences on either cyclosporine or tacrolimus. I have been on haemodialysis for just over 10 years now and only recently found out my mother is a match to me (this whole time we had thought she wasn't my blood type). The tx is planned for mid June (exciting!) and I have been told I can either choose cyc or tac in my concoction of immunosuppressants. I have been doing a lot of research trying to figure out which will be right for me (being mindful of common known side effects of each) as well as reading a plethora of academic articles on effectiveness of both on graft survival etc.

Thanks in advance!

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  • Wonderful. I was put on cyclosporine. I never had a problem
  • I was diagnosed with fsgs and was put on cyclosporine; most patients, as I understand it, with fsgs are given steroids, but my neph felt that cyclosporine was a better choice for me.  I did not have any side effects.

    Post tx, I take prednisone (5mg), myfortic (720mg twice a day) and 3mg tacrolimus twice a day.  That's a pretty standard dosage.  I've not had any real side effects other than thinning hair (temporary) and muscular shakiness (not so temporary and very annoying at times).  I also get very hot very easily. I'm very happy with all of my meds.  They have worked for me.  Since I have labs each month, it is easy to monitor the tac level in my blood to make sure I have just the right amount.

    Good luck to you!!

    • Thanks for your comment MooseMom.

      When you say 'temporary' thinning of hair, do you mean the thinning eventually stopped and hair growth went back to normal?

      Much appreciated.

      • Well, it is hard to say.  The hair loss I experienced was sudden and swift.  I contacted my tx team for suggestions for what to do, and they told me that many patients use Rogaine or biotin.  I tried both, but neither seemed to do anything, so I just waited it out.  The hair loss stopped (I still lose hair, but we ALL have "normal" rates of hair loss as it goes through its renewal stage), but I personally think my hair has remained a little bit thinner.  None of my friends see any difference, so maybe it's just me.  Also, I AM getting older, so maybe it's just a function of the ageing process.  To be honest, I like my hair better now.  Before, I had so MUCH of it that it was hard to control it.

  • My husband is on Sandimmun (ciclosporin) CellCept (MMF) and Ursofalk. We do not know which one is the one that cause hair growth, but my husband is also more "hairy". What we can not change, we live with and have fun try to cope with all the changes. We do know it is CellCept that cause skin cancer. My husband had "white skin cancer" tumor on his arm. They cut it out and there is a second one which will be cut out soon. With all the side effects and changes, it is still worth it. We had two wonderful years after his liver transplant. 

    • Thanks for your comment Willie :)

  • Hi Yang, I am Prakrit (28 years) I had a kidney tx 3 months back on January 13th 2017. I was started on Cyclosporine, Prednisolone and Myfortic. My cyclosporine was initially at 250mg dose (twice daily, i.e- a total daily dose of 500 mg). However it got tapered to 150mg twice daily( total daily dose of 300mg). However, I had excessive hair growth all over my body ( I was literally looking like Chewbacca from Star Wars) although that didn't bother me. Besides this I had no side effects from Cyclosporine. However my tx team changed it to Tacrolimus 5 days back. So now I am taking 2.5mg Tac twice daily ( total of 5 mg daily). No side effects yet except a few wierd dreams in which my hair all goes away and I am completely bald and thats exactly when I wake up ( I have been having this dream for the last four days and its always near the morning time- the bald serves me as a natural alarm) :)

    All the best for your tx in June. May the force be with you. 

    • Hi Prakrit, thanks for your comment. You must be a Star Wars fan?

      I'm curious why your cyclo dosage was so much higher compared to your Tac dosage?

      Did you experience any other negative side effects from Cyclo? E.g., overgrown gums, high bp, tingling in hands/feet, tremors, acne?

      Do you know why your tx team changed you from Cyclo to Tac?

      Prior to tx, would you say you were naturally hairier than the majority of the population or normal in the hairiness department? I'm naturally not that hairy but wonder if I were to go on Cyclo and if I were to experience the side effect of hair growth, whether that would play a factor.

      Much appreciated :).

      • Hey Yang... definitely a star wars fan... :)

        Regarding the dosage equivalence between cyclo and tacrolimus- i think 150 mg cyclosporine is approximately equivalent to 2.5 mg of tacrolimus ( brand tacsant) [just an educated guess].

        Besides excessive hair growth, I had slightly elevated BP despite the 4 medications that I take for BP (namely Arkamin, Minipress XL 5mg, Seloken Xl 50 mg, Dilzem SR 90mg)... BP has reduced after I changed to Tacrolimus but there could other factors contributing to it.

        I also have acne around my upper chest but that is due to the prednisolone as explained by my neph.

        Did not have the tingling or the tremor.

        Excessive hair growth was the only reason for changing from Cyclo to Tac...

        Before transplant, body hair was less than the average person (Indian for me) ... However after transplant, I started having higher hair growth all over my body- the hair on my hands and legs almost quadrupled as compared to pre-transplant, hair growth for the first time above my eye-brows in the periphery of my forehead, around my eyes, all around my ears, grass like hair all over the rest of my body. It did not affect my blood parameters. But you would obviously be the star attraction as the hair is pretty much visible if you step outside although that never really bothered me.... Although there is a high chance that you might not even have this side effect... because I know a lot of folks in my tx centre who are on cyclosporine and they never had this hair growth problem... however my cousin sis also had this problem (maybe something to do with genes)

        I have just been on tacro for four days so lets see how the hair growth settles do...

        Cheers mate \m/ :)

  • Hi My name is Barb  I am so happy you are getting kidney  I have had mine for almost 20 years next month.  I have been on both of these drugs one for my first transplant and the other for my second transplant. I was toxic to cyclosporine. My nephrologist tells me now they do not use it as much as they did before. Between the time I lost my first kidney and got my second Prograf or tarcrolimus came on the market  What a blessing!!  I have never had any trouble with it. write back if you have any other questions  We transplant recipients have a vested interest in keeping our gift of life. Prograf is the right med for me. I do have some mild shaking of my hands(don't carry hot stuff that is small) and you are a higher risk for skin cancer 

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