Liver transplant - Let's support each other

I had my liver transplant at MAYO Florida about 12 years ago. I am on Tacrolimus and only can get a 30 day supply at a time. I am concerned during this virus crises about being able to obtain my medicine in time since most if out medicines are manufactured in China. Can I be assured there will not be shortages?

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Very interesting question, @jerrynord.
I did some searching and I found that the U.S. Food and Drug Administration has just the information to give you the answer you seek. There have been some shortages and limited availability since last summer. However, there are also several different manufacturers as well as different generics available.
https://www.accessdata.fda.gov/scripts/drugshortages/dsp_ActiveIngredientDetails.cfm?AI=Tacrolimus%20Capsules&st=c&tab=tabs-1#

I remember that last summer, the manufacturer of my meds was switched. I take tacrolimus and cellcept. This could be the reason for it.
Jerry, Do you have to reorder every 30 days? Have you considered checking with your pharmacy about your concern?

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@contentandwell PSC is a progressive rare autoimmune disease of the bile ducts where the ducts become inflamed & scarred & are eventually narrowed & blocked preventing bile from flowing properly. The bile builds up in the liver which leads to damage and/or cirrhosis (my son is stage 4). There is no known cause & currently no proven treatments to change its course or slow its progression. In addition to the jaundice, extreme itching, fatigue, irregular sleep patterns, risk of HE, vitamin deficiency & weight loss, PSC patients also experience deterioration of muscle mass, bone loss, IBD, cholangitis, esophageal varices, ascites, increased risk of developing cholangiocarcinoma & cancer of the colon to name a few. We know of PSC patients who are far worse off than my son & have a MELD of only 6 or 7. My son is on a myriad of medications to manage his symptoms. He also undergoes ERCP every couple of months to sweep out his bile ducts, replace a stent & check for cancer. Both my husband & I would love to be his living donor but unfortunately we are past the cut off age. Yes, we are using various social media outlets to find a donor. I am in awe of these people that we don't even know who have offered to be my son's donor. We are truly humbled by the courageousness & generosity of all those who offer. It is a pretty rigorous screening for donors once they get past the health history questionnaire. God bless them all:-) I am not familiar with NASH. I will need to read up on it so I better understand. Have you been transplanted or still waiting? My best to you.

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Very interesting question, @jerrynord.
I did some searching and I found that the U.S. Food and Drug Administration has just the information to give you the answer you seek. There have been some shortages and limited availability since last summer. However, there are also several different manufacturers as well as different generics available.
https://www.accessdata.fda.gov/scripts/drugshortages/dsp_ActiveIngredientDetails.cfm?AI=Tacrolimus%20Capsules&st=c&tab=tabs-1#

I remember that last summer, the manufacturer of my meds was switched. I take tacrolimus and cellcept. This could be the reason for it.
Jerry, Do you have to reorder every 30 days? Have you considered checking with your pharmacy about your concern?

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Thanks again. I have been trying to get a 90 day supply (authorized by Mayo) but running into problems between Medicare Part B and Part D. I have been refused by my secondary insurance and also Medicare saying they don't cover it. Confusing to me.
I have enough now but had problems in the past.

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Hello there! M ame is Ramona and I’m from Maryland. I had a liver transplant July of 2015. I was 47 yrs old. I am on ad have been on tacolomus for the entire 5 yrs. In the beginning I was on 24 a day.1 mg. Throughout the past 5 yrs.,they have slowly taken me down. Now I only take 4 mg a day. Big difference. Tacolomus gave me a serious side effect. I had horrible rashes on my body. Under my breasts and below my belly button. They smelled,they were sore,had red blotches ,very ,very,very painful!! They have mostly all gone away after my last decrease several months ago!! Did u have any problems with it? My doctor said that tacolomus is the very best medicine for liver transplant!

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@stella25 Thank you for the explanation. I am surprised that you are beyond the age limits, I think many transplant centers look more at overall health than chronological age. Have you tried any different transplant centers to see if they have the same age restriction? I am sure it must be heartbreaking to not be able to help.
NASH is Nonalcoholic fatty liver disease. Most people who have NASH are overweight, I was. It starts out as fatty liver and if nothing is done it progresses to NASH cirrhosis. I had my transplant in September 2016. When I look back on my pre-transplant days it seems like a bad dream. I thank God for my donor (deceased) and that she, despite being young, had the forethought to be an organ donor. I think many young people just figure that won't die for a very long time so there is no need to address that now.

@gaylea1 After transplant you still have to have ERCPs? I never had to have that, not did I have to have the procedure to remove fluid, although I was at the point where that was about to be necessary. I recall looking at my feet one night, they were up on an ottoman, and there was fluid leaking out of the pores on my feet. They were so swollen that there was nowhere else for the fluid to go. It was very disheartening, but thankfully my transplant happened within the next week.

@jerrynord @rosemarya I had hoped to get a multi-month supply of my immunosuppressant but the pharmacy told me that it's up to the insurer. Medicare will not allow multi-months on the immunosuppressants for some reason, perhaps because they are costly.
JK

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@contentandwell yes my ERCPs were/are have all been post transplant. I had no bile duct issues prior to surgery. I don't know if it was caused when reattaching the ducts to the new liver? As for fluid build up I never had fluid build up either. Only my feet and ankles swoll up. I was put on diuretics for that and the swelling went down significantly. I also requested more than 30 days supply of tacrolimus but was told only 1 month could be dispensed (I live in Ontario Canada 🇨🇦) at a time. I have to take Prograf only though. They didn't want me on a generic brand. They did end up giving me 100 pills instead of the 60 though.

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@gaylea1 My immunosuppressant is a generic and is supplied by a speciality CVS in Boston - they send it up to me via UPS. My transplant department wants me to always use the same generic so I have made sure that they do not substitute a different manufacturer. My feet were so swollen that I couldn't put any shoes on, I had slip-on slippers that I wore all of the time. I even went to my hairdresser in slippers!
JK

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