How to get Myfortic down

[UkrainianTracksuit]

Hi, I was just transplanted (2 weeks ago) and getting used to my drugs. Myfortic has been the worst as the skunk smell/taste makes me literally gag.

Is it okay to take it with milk or juice? I found that it helps to mask the taste but the pamphlet stresses “liquid” but water underlined.

I know to avoid grapefruit, pomegranate, pomelo juices and if you take Myfortic with food, to stay that way.

But, I’m just wondering if it Is okay to have it with another liquid. Can’t ask in clinic until 2 days.

[SooMK]

Congrats on your transplant! I take Myfortic with water or coffee. It never even dawned on me to question the water or coffee thing. I find the size bothers me. I've never noticed the smell/taste. Go figure. If you're taking it with food (which I always have done) I wouldn't think it would make any difference if you took it with milk or juice. What's the difference if you wash it down with, say, apple juice, or you take it with water and proceed to eat a dish of apple sauce? If your method is to take it without food then that sounds like it might make a difference.

[UkrainianTracksuit]

Thanks for the congrats and the reply!

I take my Myfortic with food so your explanation makes good sense. I can commiserate with you over the size of the tablets. There are 2 other horse sized tabs I am currently taking and I wonder how they get down!

I am very early out of hospital so I still have a lot of paranoia and strange questions. My apologies!

[SooMK]

No need to apologize. This is the place to come. The first year with all the meds is the worst. I had that nasty Nystatin liquid to swish around and the Valcyte that was so expensive. Still, I was surprised that even at the beginning I was taking far fewer meds, far less frequently than I thought I would be. I think you will find that after awhile you don't think about it too much. And as they start taking away some of the meds, it's much better. At first I was taking each little pill, one at a time. Now I take the Myfortic by itself and then those 4 little ones in one gulp. I hope you're feeling good. It's a long haul but it's really a miracle when you think about it. So happy for you.

[iolaire]

I'm surprised your taking it with food. For me I was supposed to take it at least 2 hours after food and 1 hour before food. Same as shown here:
Take this medication by mouth as directed by your doctor, usually twice daily on an empty stomach, 1 hour before or 2 hours after meals.
https://www.webmd.com/drugs/2/drug-78665/myfortic-oral/details

To get around the food time limits I take it at 5:30 am (then back to sleep), 11:30 am and 5:30 pm.  With just water.

My pills are coated in some fashion and I've never tasted it. I wonder if your doctor could get another version with more of a coating?

[MooseMom]

Iolaire, you post really interested me because I've always taken mine with food.  After reading your post, I looked at the patient info that comes with my bottle of Myfortic, and it DOES say to take it on an empty stomach, just as you said.  So I looked at the pill bottle itself, and lo and behold, it says to take it at mealtimes.  I wonder why.  Maybe my tx team felt it would be better for me to take it with food for some reason.  I'm baffled.  But I've had my tx for almost 6 years, so I guess it's OK.

Ukranian Tracksuit, what wonderful news about your transplant!!  I'm thrilled for you.  I take my myfortic with meals, so I usually take it with either milk at breakfast or iced tea at dinner.  I've never had any problems with taking it, so maybe you can take it with a different beverage.  I don't see any problem with that.

[UkrainianTracksuit]

Yes, it’s true, that when I read the medication information pamphlet, I read how Myfortic should be taken on an empty stomach. I asked my tx doctors and they said the main thing is to take it the same way each time. Such as, if you take it on an empty stomach, do that always and if you take it with food, do it the same way. The same message was repeated in the medication education videos I had to watch. When I started the drug in hospital, they gave it to me with breakfast and so that is how I continued my morning dose. In the evening, I have a light snack. It was explained to me that’s it’s most important to have a schedule/typical way of taking the pills so that the drug levels remain stable in the blood.

I am definitely getting more used to my medications but I still follow the checklist provided. And yes, I am rather surprised that after awhile many of these prescriptions will be stopped and the number will be more manageable. I take Valcyte as well and the size is truly something!

MooseMom, I’m glad you mentioned iced tea because that’s been the one beverage that helps the most!

Thanks again for the well wishes. I did not see a transplant in my future but now I am so glad I did the double. I feel like a new person already and my quality of life has increased as well!

[iolaire]

Fyi I bought this $5 pill box for my medicine and like it:
https://www.amazon.com/gp/aw/d/B01GRUVW08?psc=1&ref=yo_pop_mb_pd_t2

I'm at six months and take four sodium bicarbonate and two magnesium with random other pills twice per day and each spot holds that. After my am meds i have a breakfast round, 11:30 am, afternoon with a snank and 5:30 right when I leave work

I have another week single spot pill holder for my 5 am pills. 

I like this on as it seems ok to travel with as it's small and the lids slide rather than having latches to ware out. On working days I keep it in my desk and it's good for that.

[UkrainianTracksuit]

Iolaire, thank you for sharing that pill box. You addressed another concern I had. I wanted to get blister packs made up at the pharmacy but I was told that some pills couldn’t go into one. I wondered if Myfortic was one of them because they are in foil in a big box. On the mornings I have labs, I have to take my pills with me and I put them all in a little container. Being a rookie, I admit I was a little nervous to do this. However, if a pill box like that works for you, I am at ease now and will purchase such a thing.

Thank goodness there are experienced people here! It really calms my nerves being out on my own.

[iolaire]

Iolaire, thank you for sharing that pill box. You addressed another concern I had. I wanted to get blister packs made up at the pharmacy but I was told that some pills couldn’t go into one. I wondered if Myfortic was one of them because they are in foil in a big box.

So I have a generic of Mycophenolic acid. It's pills loose in a biggish container to hold the 90 pills I take per month.  The jar is about 2-3 inches wide and 2-3 inches tall.

Prior to this box I was thinking of blister packs but I only know of that from some ads I see online that acted like it was an innovation. I didn't know it was an option at regular pharmacys? Are you in the US?  If so what pharmacy does that for you?

Also I use a lot of envelopes like this to hold pills for specific times: (this is an example there may be lower cost options)
https://www.amazon.com/dp/B000Y50ZD8/ref=asc_df_B000Y50ZD85378202/?tag=hyprod-20&creative=394997&creativeASIN=B000Y50ZD8&linkCode=df0&hvadid=167150673566&hvpos=1o3&hvnetw=g&hvrand=15670600439629904053&hvpone=&hvptwo=&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=9032751&hvtargid=pla-273902170949

I had them lying around the house for years and am happy I had them available now.  For example I'm on vacation right now in Hawaii and use the envelopes to hold the four sets of pills after my am set for the current day.   I write the time on them to keep them organized and only bring what I need.  That way I can discreetly dump them into my mouth well out and about.

[UkrainianTracksuit]

After some time back in Russia, I returned to Canada for a job opportunity so, no, I am not in USA. It is really intriguing how blister packs are not the norm there. It is my experience that the pharmacies here use blister packs as a regular service for those with large pill numbers and geriatric patients. At least in my experience, it is done at no further charge.

Thank you for the envelope suggestion. It does seem like a good and standard way to organize medications/times especially when away from home. It is rather compact and low cost too.

Did you start off on the generic from the beginning? In my medication information, it says there can be no substitutes and that includes generic forms. Naturally, that means I have a higher cost but that’s okay and manageable. I would actually prefer a bottle instead of the big box. And further, I have to be on the ball with my home pharmacy as Myfortic has to be ordered. The box has 120 tablets and it seems like I go through them like water. (4 a day so a months supply)

[SooMK]

The transplant clinic sent me home with an AM/PM pill container. Every Saturday evening I fill it up with my pills for the week. I use plastic envelopes for my "on the road" meds. They are small ones sold at all the drug stores here in groups of 50. I have only AM and PM pills to take now. Before a trip I organize them into the AM/PM plastic envelopes. I can fill them and push about 10 days' worth in an empty prescription bottle. One container for AM pills, one for PM pills, each AM or PM dosage of all my meds in their own little plastic pouch. I always bring an extra week's worth of meds with me and always carry all my meds with me if I'm flying, never in checked baggage. I have read that you should carry meds in their original bottles but I'm not doing that. When I go out locally, I always have an extra day's worth of my meds in my handbag in case I'm returning home later than I expect or something unexpected happens. I use the same mail order pharmacy for my transplant meds that was used at the hospital and was recommended to me. They are wonderful and contact me every month regarding what I need for each month. They also contact the doctor for refills. This was all more challenging during the first year but now it's pretty straightforward. Both my tacrolimus and myfortic are the generic versions.

[iolaire]

I have only AM and PM pills to take now.

That sounds easy. How long have you had your transplant?  I'm at six months and have fix batchs of pills with the various minerals, sensipar and phospha neutral, and anti rejection drugs. 

[UkrainianTracksuit]

May I ask a really stupid question? I am sure there is someone out there that will think I am  .

It seems you guys are on the generic versions. Is there any reason why my tx hospital would prescribe only the brand name and say absolutely no substitutions? Is this just a money thing? I am curious.

I am only a couple weeks post-op and I just have morning and evening pills as well. My numbers are great and the team is happy. My morning pills are a substantial number (all other things like antibiotics, anti-fungals, stomach meds, prednisone, etc, etc) but I just take my second dose of Myfortic in the evening. That's all. In all honesty, I thought the medication situation would be more complex.

[MooseMom]

UkrainianTracksuit, you should find that after the first year, your med load with decrease substantially.  After six months, I no longer had to take antibiotics, antifungals nor stomach meds (I never actually needed the stomach meds).  So, you will find it easier to manage your pills.

Pill boxes are invaluable.  I have several, one for at home and a smaller one for travel.  The one I use at home has room for AM/Noon/Evening/Night meds for the seven days of the week.  Each "day" can be pulled away from the base, and I can stick it into my handbag if I will be away all day.

My travel box is smaller but does not have a way to pull away individual days.  It is easier to put it into my carry on bag when I fly.  When I get to my destination, I use those little plastic bags like SooMK mentioned.

For my own amusement, I have several lovely pill boxes that I use when I'm going out for dinner and need to take my pills with a meal.  My husband bought me a sterling silver shell shaped (try saying THAT rapidly!) pill box from an antique shop while we were on holiday.  Maybe you can treat yourself to something nice like this once your medication load is lessened!

No question is stupid! 

I am on the generic version of every med that I take.  My tx clinic is happy with that.  I don't know why your tx center would feel otherwise.

I, too, thought the medication situation would be a lot more burdensome.  I took far more pills before my transplant!

[iolaire]

It seems you guys are on the generic versions. Is there any reason why my tx hospital would prescribe only the brand name and say absolutely no substitutions? Is this just a money thing? I am curious.

Once they are happy with your meds they probably don't want to change anything for fear of it no longer being the correct doesage for you.

I don't know why I got a generic but here in the US their may be a money factor. I think there are a lot of patients who will be challaned to make all the copays in the medicines. I have a good insurance as a backup to Medicare but still I expect to pay about $3,500 in copays per year (that's my max out of pocket - plus maybe $6,000 to pay for both insurances plans).  For many that would be difficult to pay. By using generics they may be causing the copay on drugs to be lower each month so you pay less.

Talk to you pharmacy first and see if there is a prescription that will give you loose pills of the same brand. Maybe they can order some other packing for you.

[UkrainianTracksuit]

Thank you so much everyone for the advice and help!

I have another question but this is about Advagraf (tacrolimus) and don’t want to start another thread. It is dietary related too.

So, I know about grapefruit/grapefruit juice, pomegranate, star fruit and pomelo. But today, I was reading information online from another tx center in the USA, and they had extra fruit on this list. One was Valencia oranges used to make orange marmalade. Others were mango, kiwi. passion fruit and Goji berries. None of these were listed in my information booklet. Are you aware of these too? Were these brought up to your attention? If not, have you ate them and the effects were as serious? Obviously, I am not going to risk my health over some fruit but I have to admit I’m a little sad. I looked forward to some good marmalade and kiwi again.

[SooMK]

Iolaire--It's the same for me as MooseMom, I started off with quite a few meds but even with those that was 3 times a day. At about the 4 month point my white cell count was very low and I was told I had the BK virus. The clinic took me off Valcyte, Bactrim and Myfortic. At that point my drugs went to just AM and PM. Then after several weeks they added back the Myfortic, gradually increase the dose. They never added back the other drugs. I'm coming up on my 4th year since my transplant.

UT--I was only told about avoiding pomegranate and grapefruit. These other forbidden fruits are new to me. I have definitely had kiwis and mangos a few times. If they had a negative effect it was lost on me.

I think I've been on the generic meds the whole time. I didn't even question the generic vs name brand.

MM--I don't know why I didn't think to get a cool little pill box for the odd late evening out. Getting those pills out of a tiny plastic bag, frequently in the dark in a moving car can be challenging. I've been wanting a small, like 2 oz container for water. I don't need much water to take my pills and I don't want to carry around even the half size water bottles. I'm still searching for that.

[UkrainianTracksuit]

Is the fruit question something I should ask the dietitians that visited me in the transplant unit or something I would ask the doctors at the next clinic day? I know I had a mango juice before I knew about this but my tacrolimus levels were already very high and they were making adjustments.

[MooseMom]

Is the fruit question something I should ask the dietitians that visited me in the transplant unit or something I would ask the doctors at the next clinic day? I know I had a mango juice before I knew about this but my tacrolimus levels were already very high and they were making adjustments.

I think everyone experiences high tac levels shortly after transplant, so adjusting and experimenting with dosages is entirely normal.

I have not heard about the other forbidden fruit and actually looked at the dietary info I was given when released from hospital; I didn't see any mention of them.  That said, just as whoever you see next!  I'd be really interested in their reply, so please let us know what they say!

[SooMK]

I received handouts and instructions when I left the hospital after my transplant. The food restrictions were in there. I did a lot of reading on the web and adopted some of the restrictions I read there, too. The first year is one of recovery and the clinic figuring out your proper medication levels. You're more likely to have issues that first year which also contributes to medication fiddling. Gradually things seem to settle down. I think it's good to be ever vigilant and follow all instructions to the letter. I just noticed that you had a kidney-pancreas transplant. I wonder if the food restrictions might be different if you have a double transplant vs only a kidney transplant.

[Xplantdad]

Thank you so much everyone for the advice and help!

I have another question but this is about Advagraf (tacrolimus) and don’t want to start another thread. It is dietary related too.

So, I know about grapefruit/grapefruit juice, pomegranate, star fruit and pomelo. But today, I was reading information online from another tx center in the USA, and they had extra fruit on this list. One was Valencia oranges used to make orange marmalade. Others were mango, kiwi. passion fruit and Goji berries. None of these were listed in my information booklet. Are you aware of these too? Were these brought up to your attention? If not, have you ate them and the effects were as serious? Obviously, I am not going to risk my health over some fruit but I have to admit I’m a little sad. I looked forward to some good marmalade and kiwi again.

Hi There, you have some great questions. My daughter has been on immunosuppressants since her heart transplant in 1990 and has gone through many different ones along the way. Thank God, most of the newer ones are less toxic to the body and the kidneys

You are correct about certain fruits such as Valencia Oranges causing issues...and we were told this info when my daughter had her kidney transplant in December of 2016.

If you are having issues with myfortic, they offer a timed release version that may help. Or, there are alternative medications such as Everolimus (Afinitor) that are available as the back up immunosuppressant. Myfortic has been known to cause issues with low white/red cell counts in some folks-it also increases the chance of getting a viral infection. Some folks just can't tolerate myfortic.

There are generics for all of the meds listed and they work equally as well. Talk with the transplant center while you are still going often...about all of these things. Also, once you are a year out, they will drop certain antifungal meds.

No person is the same, so you may experience vastly different issues than others. Any questions you have-ask away. I guarantee someone here has had the problem/issue

[UkrainianTracksuit]

Thank you so much for the thoughtful and helpful replies.

I had post-tx nutritional education but it was mainly to put me on a high protein/high calcium diet. I am finding this really hard and it feels like I am always eating. Being on prednisone, I didn't get the increased appetite and I am actually losing weight. I didn't have much on my bones to begin with! It doesn't help that I have the side effect of abdominal cramping from the Myfortic. However, when it came to fruit, very little was discussed: just the biggies like grapefruit.

With the pancreatic tx, I know a new world of foods are open up to me but I am set in my eating habits. However, since it is a double tx, they stressed it was imperative to get lots of protein to heal. Once healed, I will be on a more average protein/calcium consumption.

As for the fruit, I left a message with the dietician and will ask in clinic. Will definitely know what they say.

[UkrainianTracksuit]

Getting back to everyone about the fruit issue...

They are still looking into it. As far as it stands, the research concerning the extra fruits (kiwi, mango, etc) is related to Prograf and not Advagraf. So, while both are tacrolimus, we know there is a difference and the research just hasn't been done yet. However, the staples remain, so no grapefruit or pomegranate as those are the common link. However, if these other fruits were to impact the trough levels seriously, they would have a warning in the patient education materials. In any case, I won't risk them until I know more later. If there is anymore information, I will add it here.

[Rerun]

Yah for Transplant!  May you have it forever!