Replies

  • Hello,

     

    I am quite similar to Linda - I take 2mg morning (9am) and 1mg evening (9pm) and have both a pillbox with 4 possible doses perday/7 days in large easy to see bins. I use my phone alarm which by my own rule is never dismissed before all the dose is taken.

  • Hi, 

    I take 2 at 8 am and 1 at 8 pm. I know they have to be taken 12 hours a part and all meds whether transplant or not need to be taken at the same time everyday if you want them to work the best. I have a pebble watch I wear so I don't miss a dose. It vibrates at the different alarms I have set. Plus I got a 3 slotted pill holder I have on me so I can never miss my meds. Also, I have a pill holder in my purse with my pills in it just encase I ever leave my house with out my daily holder. 

  • This is definitely something you want to clear with your transplant clinic. I have taken unequal doses before (I'm almost 2 years in) but only at their direction to lower or raise my tacrolimus levels. 

     

    One or more of meds I take gives me immediate nausea and I will throw everything up if I don't take Zofran about 5 minutes prior. This is a bigger problem in the morning, so it's probably related to an empty stomach, though I've had it happen at night too. Since I've been home in quarantine, I've gotten sloppy with my 8am - 8pm times. I don't have to get up at a certain time so I don't feel like waking up, taking the Zofran, waiting 5 minutes and then taking the 27 pills. It's terrible of me and I feel very guilty about it, especially since I've been rigidly compliant this entire time.

    But today I read something about being late too often or not balancing the dose correctly can sort of cause you to get behind chronically and lead to rejection. So I'll stop being lazy and get back on my schedule, even though I'm sure I'll be home from work for a long while. I've also realized how many people now claim they are "immunosuppressed" and need special accommodations at work that I've been requesting unsuccessfully for 2 years. When questioned they aren't actually suppressed but believe they have a weaker immune system due childhood history of asthma or chemo that ended 5 years ago, stuff like that. All I can hope is that employers will take this more seriously in the future. 

     

    I work directly with the public and this virus hasn't even begun to peak here in the United States yet, so I'm thinking May? I don't even know. I'll be very concerned about being around others until we know more about this.

    I just got over influenza A after 2 solid weeks of feeling miserable, threats of hospitalization (I finally convinced them I'd be safer at home, but they still called every day to get my temp) two rounds of Tamiflu and a COVID-19 test. I haven't had the flu for 20 years and haven't even gotten a cold since my transplant, so it was really difficult and painful. I know the immuno response from COVID-19 is much worse and they haven't had much info about any organ transplant recipients who've had it other than a few stories out of China. I'm hugely skeptical of those because I've a few friends living in China and what they are reporting (and the horrifying videos they've sent - new videos from this weekend and last week) about the virus is very different from what their government is reporting. So that makes me very cautious too.

     

    Well now that I've given you way more info than you need lol - stay well! 

  • You can take unequal dosages. Just remember that Tac has a half life of 12 hours so if you do blood draws in the AM the reading will show the trough level of the PM dose.

     

  • It's my 18 years of Kidnet Tx this year. I'm take 1 mg in the morning and 0.5 mg at evening.  The dosage is adjusted based on the tacro level in the blood. 

    Take care and happy New Year to all!

  • The general intent is to keep an adequate even blood level at all times, hence the "double doses." Shortly after ingestion, the level spikes, often to it's highest, then slowly drifting down throughout the dose cycle (This spike may explain the intensity of some of the side effects after ingestion, even if you have been taking the med for years.) Astellas did reformulate the med into a micro-encapsulated version, Astagraph XL, in an attempt to relieve these spikes. For this reason, blood work should be performed 12 hours from the last ingested dose, to produce accurate test results and levels.

    If you did ingest a larger dose in the AM, it would metabolize in the 12 hour cycle and result in lower PM blood levels, even with the second dose, defeating the intent. It is best to keep the lowest, most effective blood level of all our meds to be protected enough throughout the 24 hour cycle. If you cannot tolerate these formulations,  have a frank discussion of your own Tx team about your options.

  • Thanks everyone

  • All Prograf/Tacrolimus dosage amounts depend on what your lab and organ function results are.  This is how a transplant center will determine what your dose is.  Follow whatever they tell you to do.  Can each dose vary?  Yes.  There are time where you might have a dose of 2.5 mg AM and 3 mg PM or a 4mg AM and 5 mg PM (These are doses I've actually had at one point).  Again, it all depends on how the levels are reading when they get your labs.  This is why it's important to draw labs according to the schedule your center wants it at.

     

  • I would think it would be better to keep a more consistent level of Prograf in the blood stream, but I am not a medical professional nor do I know your situation so I would suggest inquiring what your doctor and transplant team feel is best for you. I wish you well.

    Warm regards,

    Bobbiejo

  • I take 2mg AM

    and 1.5 PM

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