Being that I rally enjoyed my grapefruit juice, about two months after my transplant, the potassium level went through the roof on my blood test. I called the doctor and told me to stop immediately. "Didn't you read the manual we sent you home with?". Guilty. I did not. Now, I take Fludrocortisone three times a week to prevent the rising of potassium, which can cause a heart attack I've been told.
I am 17 months out of heart & bi lateral lung transplant and I know exactly what you mean. They are hesitant to try anything. I am doing fantastically well considering everything. I find by eating a lot of fresh veggies, both raw and cooked, along w small amounts of protein (occasional favorite desserts and junk food to) I can walk the fine line between diarrhea and excessive water retention. I find exercise to be crucial as well as some form of stretching, yoga, tai chi, whatever it may be also important. This is pretty normal stuff for a healthy normal body but for us Transplantees because we are always in an inflammatory state, it is crucial for longevity. And comfortable longevity at that. Research anti-inflammatory foods/diets and see what would work for your needs.
I would advise you to speak with your doc's and see how far they let you go taking the barest minimum of whatever medicines you need. Stepping them down. Take only what is truly critical and use food and exercise to balance the rest. The payoff is feeling more alive and in control of your body, probably due to less side effects, and better blood sugars, less pain etc. I find often the medical community overmedicates and with proper monitoring and a little knowledgeable insistence the results are favorable on both sides.
I'm impressed with the information that you located. I was wondering if you had found any information or lead me to find information in regards to keeping one's body what I call "semi-normal." I suffer from rheumatoid arthritis, osteoporosis, and bad leg pains. I want to find something that I can eat that would help me with this but not harm my transplant. I have spoken with some nutritionists in my medical group but they are hesistant in anything that I want to try. I want to be able to live as much a normal life as I did before the transplant and I know that the medications we have to take cause some of the issues but I was wondering if there was anything or anyone out there that could help with these issues. Thanks.
you are not alone there I had kidney/pancreas transplant 8 yrs ago. Have done really well for most part had alot of problems I can deal with but the Diarrhea is the worst thing in the world almost caused me to give up a few times. Sorry you are going through this but believe me you are not alone.
I have taken prograf and cellcept for 12 yrs. A month ago I went nito renal failure.The kidney Dr. said it was from the prograf that this happened. The liver Dr.disagrees and is putting me back on prograf lower dose. I have been taking prednisone in the mean time . Kind of worried this will happen again. Anyone else have this problem in the past and what was done about it .
Thanks , any input would be welcome !
I am kidney transplant recipient. I have had many problems, but the diariara is most troublesome. Any suggestions? Yes I agree my new kidney is a gift of life and is working good, but the rest of my body has and is going thru a lot of changes and not good ones.
I'm doing some research for a friend who has been on both Celcpt and prograf since having a liver transplant over 13 years ago.We were talking about him taking vitamins.I have found some such as calcium and omega 3 that is not good for him.Is there anything else he should avoid other than what I've mentioned and grapefruit? TB
HI, I had a kideny transplant 12 years ago and never knew about potassium. I was never told the only thing that I knew was about the grapefruit and that my sugar could go up and that I would gain weight.
I did gain weight and my sugar is boardline now other wise I'm doing and feeling good. Good luck to everyone that has a transplant " IT'S THE GIFT OF LIFE"
1 mg capsules of Prograf are available at most pharmacies in the US. If they don't have them on hand they can get them quickly. I would guess that 1 mg capsules are the most common size capsules here.
thanks kande and D977 for all information about prograf and its side effects .....this is sudarshan liver transplant recipient from India ....can u tell me from where u people will get this prograf capsule 1 mg .. looking forward for your reply
Hey sweetheart, don't be a stranger! Visit more often. Maybe after Nick transplants you will both hang around here. Oh that would be great....to have both of you!!! ((((HUGS))))
Thanks for helping me you are a good friend and help so many here it was the least i could do..
Big Love and hugs back
Dan,...I love you! This is wonderful! I have never been so impressed with anything like this before. How long did you work on this friend? You know I am in debt to you for the rest of my life!!! :o) Thank you so very much! This is exactly what every transplant recipient needs. A million thanks to you forever! ((((HUGS)))) KANDE
The rest of the article
Medicines and their possible side effects can affect individual people in different ways. The following are some of the side effects that are known to be associated with this medicine. Because a side effect is stated here, it does not mean that all people using this medicine will experience that or any side effect.
Difficulty in sleeping (insomnia)
Shaking, usually of the hands (tremor)
High blood pressure (hypertension)
Disturbances of the gut such as diarrhoea, constipation, nausea, vomiting or abdominal pain
Skin reactions such as rash, itch, acne, sweating, hair loss
Raised blood sugar level (hyperglycaemia)
Raised cholesterol level (hypercholesterolaemia)
Disturbances in the normal levels of chemical components (electrolytes) in the blood, eg raised potassium, decreased sodium, magnesium, calcium
Disturbances in the normal levels of blood cells in the blood
Shortness of breath (dyspnoea)
Appetite and weight changes
Pain in the muscles or joints
Anxiety and agitation
Pins and needles or numb sensations
Heart problems such as abnormal heart beats, enlargement of the heart, heart failure
Kidney problems such as decreased kidney function or kidney failure
Liver problems such as jaundice, hepatitis, liver failure
Ulceration or bleeding in the gut
Abnormal blood clots in the blood vessels (thromboembolism)
The side effects listed above may not include all of the side effects reported by the drug's manufacturer.
For more information about any other possible risks associated with this medicine, please read the information provided with the medicine or consult your doctor or pharmacist.
How can this medicine affect other medicines?
It is important to tell your doctor or pharmacist what medicines you are already taking, including those bought without a prescription and herbal medicines, before you start treatment with this medicine. Similarly, check with your doctor or pharmacist before taking any new medicines while taking this one, to ensure that the combination is safe.
The immunosuppressant ciclosporin should not be used at the same time as this medicine.
There may be an increased risk of side effects on the kidneys if this medicine is taken with other medicines that can affect the kidneys, such as the following:
aminoglycoside antibiotics, eg gentamicin
non-steroidal anti-inflammatory drugs (NSAIDs), eg ibuprofen, diclofenac, naproxen
Hormonal contraceptives such as the pill and the patch may increase the blood level of tacrolimus. Tacrolimus may also reduce the effectiveness of these hormonal contraceptives. For this reason women who could get pregnant should ideally use a non-hormonal method of contraception, eg condoms, to prevent pregnancy while taking this medicine. Seek advice from your doctor or pharmacist.
The following should be avoided while taking this medicine as they increase the risk of the level of potassium in your blood rising too high (hyperkalaemia):
potassium-sparing diuretics, eg amiloride, spironolactone, triamterene
potassium-containing salt substitutes.
The following medicines may increase the level of tacrolimus in the blood, which could increase the risk of side effects. If you are taking any of these with tacrolimus your doctor may need to reduce your dose of tacrolimus:
the macrolide antibiotics clarithromycin, erythromycin, telithromycin
the azole antifungals fluconazole, ketoconazole, itraconazole, voriconazole, clotrimazole
HIV protease inhibitors such as ritonavir, nelfinavir, saquinavir
chloramphenicol (by mouth or injection)
The following medicines may decrease the level of tacrolimus in the blood, which may make it less effective and lead to transplant rejection. If you are taking any of these at the same time your doctor may need to increase your dose of tacrolimus:
the herbal remedy St John's wort (Hypericum perforatum). You should not take this herbal remedy while you are taking tacrolimus.
Corticosteroids such as methylprednisolone may increase or decrease the blood level of tacrolimus. Your doctor will adjust your tacrolimus dose as required.
Vaccines may be less effective in people taking this medicine. This is because tacrolimus suppresses the action of the immune system and could prevent the body from forming adequate antibodies. Live vaccines should be avoided during treatment with this medicine because they may cause infection. Live vaccines include the following: oral polio; rubella; measles, mumps and rubella (MMR); BCG; yellow fever and oral typhoid vaccines.
Other medicines containing the same active ingredient
There are currently no other medicines used for transplant rejection available in the UK that contain tacrolimus as the active ingredient.
Protopic ointment contains tacrolimus, but is used to treat eczema.
Last updated 14.6.2006
I found some info on prograf and the active ingredient drug tacrolimus.
it is a big article and will have to maybe post in two areas,
How does it work?
Prograf capsules and injection contain the active ingredient tacrolimus, which is a type of medicine called an immunosuppressant. Immunosuppressants are used to dampen down the activity of cells in the immune system.
When you receive an organ transplant the donor cells, although matched as closely as possible to yours, will not be identical to yours. This means that your immune system will recognise the tissue as foreign and try to attack the transplanted organ. This can result in the transplant being rejected.
Tacrolimus is used to prevent transplant rejection because it suppresses the activity of the cells in your immune system that would normally attack the transplanted tissue.
Tacrolimus acts on the white blood cells. It works by blocking the action of a substance called calcineurin that is found in white blood cells called T-lymphocytes. This action prevents the T-lymphocytes from producing substances called lymphokines.
Lymphokines are normally produced by the T-lymphocytes when a foreign substance is detected in the body. The purpose of the lymphokines is to stimulate the production of more T and B lymphocytes, the white blood cells responsible for regulating and triggering immune responses. The T and B lymphocytes attack foreign invadors and defend the body against infection and foreign cells.
By preventing the production of lymphokines, tacrolimus suppresses the action of the T and B lymphocytes. This stops these cells from attacking foreign invadors and triggering other responses by the immune system.
Tacrolimus is used to prevent rejection of kidney, liver and heart transplants. It is used in combination with other immunosuppressant medicines, such as corticosteroids.
Tacrolimus can be given by mouth or by a drip into a vein (intravenous infusion) if administration by mouth is not possible.
What is it used for?
Preventing the body rejecting a transplanted kidney, liver or heart
Treating transplant rejection when other immunosuppressants have failed to control the rejection.
Prograf capsules should be taken on an empty stomach, or at least one hour before or two to three hours after a meal.
This medicine may cause various side effects that could reduce your ability to drive or operate machinery safely. These effects may be enhanced by drinking alcohol. You should make sure you are aware of your reaction to this medicine before driving or operating machinary.
Unless your doctor or pharmacist tells you otherwise, you should avoid drinking grapefruit juice while taking this medicine, as it may increase the level of this medicine in your blood and therefore increase the risk of side effects.
This medicine can cause the amount of potassium in your bloodstream to increase. For this reason you should avoid consuming large amounts of foods that have a high potassium content, for example dried fruit, bananas, tomatoes and 'low sodium' salt, while you are taking the medicine. You should also avoid potassium supplements.
This medicine increases your susceptibility to infections because the suppressed immune system is less able to fight them. For this reason, consult your doctor immediately if you develop a sore throat, fever, any infections, or begin to feel generally unwell.
People receiving long-term or intensive immunosuppressive treatment are at increased risk of developing lymphomas and other cancers, particularly skin cancer. To reduce the risk of skin cancer, you should minimise your exposure to strong sunlight and UV light by wearing protective clothing and using a sunscreen with a high protection factor. Discuss this with your doctor.
This medicine may be harmful to an unborn baby, so it is important to avoid getting pregnant during treatment. Unfortunately, this medicine may also affect the effectiveness of hormonal contraceptives such as the pill. For this reason, women who could get pregnant should ideally use a non-hormonal method of contraception, eg condoms, to prevent pregnancy while taking this medicine. Seek advice from your doctor or pharmacist. Consult your doctor immediately if you get pregnant during treatment.
During treatment with this medicine your doctor will need to monitor various things to make sure the treatment is working properly and not causing side effects. Your blood pressure, nervous system and eyesight will be monitored, and your heart using an ECG. You will also need blood tests to monitor your kidney and liver function, blood sugar, blood clotting, blood cells, levels of salts (electrolytes, eg potassium), and amount of the medicine in your blood. Measuring the level of medicine in your blood helps your doctor to prescribe you the correct dose. If you get diarrhoea during treatment, this can affect the amount of medicine in your blood and extra monitoring of your tacrolimus blood level is recommended.
Use with caution in
Decreased kidney function
Decreased liver function
People with an abnormal heart rhythm present from birth and seen on a heart monitoring trace (ECG) as a 'prolonged QT interval'
High blood pressure (hypertension)
Swelling due to excess fluid retention (oedema)
People being treated with corticosteroids.
Not to be used in
Allergy to macrolide type antibiotics, eg erythromycin.
This medicine should not be used if you are allergic to one or any of its ingredients. Please inform your doctor or pharmacist if you have previously experienced such an allergy.
If you feel you have experienced an allergic reaction, stop using this medicine and inform your doctor or pharmacist immediately.
Pregnancy and Breastfeeding
Certain medicines should not be used during pregnancy or breastfeeding. However, other medicines may be safely used in pregnancy or breastfeeding providing the benefits to the mother outweigh the risks to the unborn baby. Always inform your doctor if you are pregnant or planning a pregnancy, before using any medicine.
This medicine should only be used during pregnancy if there is no safer alternative and if the potential benefit to the mother outweighs the potential risk to the developing baby. If this medicine is used during pregnancy there is a risk of premature delivery and side effects on the baby. The newborn baby should be carefully monitored for any side effects of the medicine, in particular on the kidneys.
Women who could get pregnant should ideally use a non-hormonal method of contraception, eg condoms, to prevent pregnancy while taking this medicine. Seek medical advice from your doctor.
This medicine passes into breast milk. As this could be harmful to a nursing infant, mothers who need to take this medicine should not breastfeed. Seek medical advice from your doctor.
Glad your ok i found a list of potassium rich foods also to back up your list.
Potassium rich foods Potassium Content Sodium content RDA % * Calories
Soya flour 1650mg 9mg 47% 450
Black treacle 1500mg 97mg 43% 260
Apricots ready-to-eat 1380mg 15mg 39% 160
Bran Wheat 1160mg 28mg 33% 200
Tomato Puree 1150mg 240mg 33% 70
Sultanas 1050mg 20mg 30% 275
Raisins 1020mg 60mg 30% 270
Potato chips (crisps UK) 1000mg 1000mg 29% 450
All Bran 1000mg 900mg 29% 260
Wheatgerm 950mg 5mg 27% 300
Figs 900mg 60mg 26% 100
Dried mixed fruit 880mg 48mg 25% 230
Bombay Mix 790mg 800mg 23% 500
Papadums 750mg 2400mg 22% 370
Currants 720mg 14mg 22% 270
Sultana Bran 660mg 700mg 19% 300
Seeds average 650mg 20mg 18% 500
Nuts average (unsalted) 600mg 300mg 17% 600
Baked Potato + skin 600mg 12mg 17% 130
Roast Potato 550mg 9mg 16% 160
Oven chips 530mg 50mg 15% 170
Bran Flakes 530mg 1000mg 15% 320
Gammon lean 520mg 2200mg 15% 170
Soya beans boiled 510mg 2mg 15% 140
Plantain boiled 500mg 4mg 14% 112
Raisin Splitz 500mg 10mg 14% 340
Weetos 500mg 300mg 14% 370
Crispbread 500mg 220mg 14% 320
Muesli low salt 450mg 390mg 13% 360
Sardines 430mg 650mg 12% 200
Pilchards 420mg 370mg 12% 125
Veal 420mg 110mg 12% 230
Wholemeal Pasta 400mg 130mg 11% 320
Banana 400mg 1mg 11% 96