Cyclosporin 3 times a day?

Hi everybody,

I'm new to this site so forgive me if I've posted this in the wrong section!  I'm just wondering if anyone is on cyclosporin 3 times a day?  I've only seen twice daily on here.  If you are on it 3 times a day, how do you handle the timings?  I'm currently taking it at 6am, 2pm and 10pm but somedays struggle to stay up so late/get up so early.  I am getting used to it but just wondering if anyone has any tips?

Also wondering when people saw peak lung function?  I'm almost 5 months post double lung now and my lung function hasn't improved from about 6 weeks.  It's currently 65% which I know is fantastic! But I want better.  Could acid reflux be keeping it low?  I had a 24 hour ph test and they found I have very bad acid reflux.

Anyway, thanks for reading,

Caffeinated

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Replies

  • Thank you for the feedback Rise and Ed.  I am sorry it has taken me so long to reply.  I don't have a home computer and can't seem to reply to this site using my phone.  And to be honest, I've been pretty busy with going out for my birthday and just using up all this extra energy I find myself with!

    I saw my doctor the other day and he says that my acid reflux is bad enough that it could be the reason my lung function has stopped improving.  I am going to have an operation to fix this.  He then expects all that to improve.

    Also, I asked about the cyclosporin dosage.  Apparently, most transplant patients are on twice daily but lung transplant cf's are put on it 3 times a day.  I think it has something to do with absorption.  I'm on 200mg 3 times.  I must clarify, I haven't missed a dose, despite the times.  I was finding it difficult because I was told to eat with the cyclosporin but they have since said that a glass of milk is fine.  This makes things a lot easier and I am finding it easier to stay up now.  Yes Ed - I use an alarm on my phone but to be honest, it's not very good.  It only alarms once and sometimes I don't even hear it!  Luckily I'm pretty good with remembering anyway. 

    Rise - Thanks for the reassurance about the kidneys!  It is one of the things that deeply concerns me about these drugs.  I know some cf's who have had double lung only to require kidneys a few years later.  I will definitely be making a huge effort with my diet and I think some old cf habits (eating what I want) will be changing shortly.

    I hope everything is going well with you guys.  I'm feeling stronger every week.  Somedays I feel like I'm on such a high.  Being able to breathe and do things I haven't done in years or which once took huge effort (and now is easy) is incredible!

    xx

    • Hi there

      Thank you so much for remembering us:) Glad to hear you are feeling better overall.

      When watching what you eat it is difficult at times because healthy foods do not have have as many calories which leaves many of us eating more. Not a bad thing if you have a good appetite.

      I hope you sleep with your bed elevated or at least use several pillows.

      Keep in touch!

  • Welcome!

    I can't speak much about the lung function since I'm a kidney transplant. As for the cyclosporine doses 3x a day is not common, and most people are on 12 hour doses so you take 2x a day.

    The 2x a day thing works because the cycle of cyclosporine in the blood stays for 12 hours so you take the next dose as the last dose is about to "wear off" so to speak. Another reason is the timing makes it convenient to remember and take for patients.

    Rise has a point, your dose is probably high so your doctor decides to break the large doses into 3 smaller doses. But this is just a guess on my part. You'll have to ask your doctor about it. Make sure to tell him about your issues, because forgetting a dose or missing one due to being sleepy is not a good thing.

    Do you use alarm clocks? This really helps but be honest with your doctor about the difficulty of staying up.

    Just to give you a background, though like I said this is a bit of a guess why your doctor splits the dose into 3x/day. If your dose is really high, splitting it up to smaller doses lessens the highs and lows of the drug in your blood, this keeps things more stable. But more importantly, for cyclosporine (and also prograf), having too high a dose harms your kidneys. 

    What happens is in the first 2 hours, the drug peaks (max effect) in your blood. So if the dose is really high, each time it reaches this high this can slowly take its toll on your kidney. Whereas, if you take 3 smaller doses, the highs don't go as high so less chance of damaging your kidney.

    Kidney damage is often something doctors of heart, lung, liver tx patients watch out for if you are on cyclosporine or prograf.

    If you are having acid reflux, make sure to tell your doctor about this. The doctor can give you something for it, like nexium.

    • Regarding kidney issues-if your kidneys are healthy don't worry too much.

       I believe that a healthy diet high in fiber, lots of veggies, moderate amounts of fruit, healthy juices, electrolyte drinks, water etc...daily will help to keep your kidneys healthy even though you are taking transplant drugs.

      I believe it all depends on how your start out with your transplant and I can only speak from my own personal experience that a healthy diet has always after 17 years taking Prograf has kept my kidneys in top shape.

      So eat healthy and because you have CF, I am sure you can eat as much as you like. Just something to share with you-worrying is not good. In the beginning with transplant, they do like to keep your drug levels higher and most likely will bring your drug dossage done shortly.  You really need tell  your doctors about missing doses.

      check out http://mymedschedule.com

      See you around our town

      Risé

       

  • Hi Caffeinated!

    Welcome to our world! I am sorry I do not take Cyclosporine- Can your doctors give you the drug at a higher does twice daily? Did you tell them how important it is that you get your rest? 

    It can take months to a year to improve lung function.  If you have a serious case of Acid Reflux, what are you doing about it? Do you sleep on lots of pillows? Do you watch your diet and avoid acidic foods?

    I think 65% after five months is great-be easy on yourself ok

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