Discussions that mention prograf

Lung & Respiratory Disorders / COPD board


Above poster~ Probably the only things the doctors will be concerned about with giving you the option of transplant is the pneumonia (how you got it) and GERD. As GERD and pneumonia can lead to rejection of transplanted lungs. Some centers won't consider someone that has GERD issues. Some will, but you will either have to be on something like nexium or protonix for life, or have the nissen fundoplication (GERD surgery) before they will list you for transplant or they will do the nissen fundoplication the same time as your lung transplant. (I think I read that you mentioned GERD, I just scanned the post really fast)

To the original poster. You might want to talk to your doctor about the drugs Imuran, IVIG, Prograf, Cytoxan, and CellCept.

Imuran, Prograf, and CellCept are anti-rejection drugs that transplant patients take and people with auto-immune disorders take. So seeing that you two haven't had a transplant and/or don't have an auto-immune disorder, getting your insurance to cover these medicines could be a bit hard/time consuming. These drugs help with respiratory diseases and have shown to be helpful in persons with lung diseases that haven't yet had a transplant as well as those that have been transplanted. IVIG is also used for patients with auto-immune disorders and transplant patients that are in rejection.

IVIG can help slow the progression of certain auto-immune and lung diseases. Its an infusion through IV (a PICC, Port-a-cath, or Central line, its not given through a regular IV because it will mess them up and the regular IVs won't hold up for it), standard dose is you get one bag a day for 4 days in a row, once a month. But the dosage really depends on why you are getting it and how bad you are. It is a blood product. You know how if you get a bag of blood, its from one donor. The bag of IVIG is a bag mixed full of 1000 different donors.

Prograf, CellCept, and Imuran can also slow the progression of the disease and if caught right and once find the right dosage that works for that particular person, it can actually improve and stabilize your lung function.

Most doctors, at least in my area, don't allow the patients that are going to consider getting a transplant use the drug cytoxan because it can cause kidney damage and person that have a transplant will have to take medicines for the rest of their life to prevent rejection that is hard on the kidneys. So medicines that are prone to cause kidney issues are usually avoided and because it can cause secondary cancer. Cytoxan is a cancer drug, but is also used for people with auto-immune disorders such as RA and Lupus and other diseases that are not FDA approved (so considered experimental) such as respiratory diseases. And another side effect of this drug is respiratory problems.

I have taken Prograf, CellCept, Imuran, Prednisone/dexamethasone, xolair injections (this is used for severe asthma and was used as experimental on my as I didn't/don't have astham) and IVIG for my lung disease pre-transplant. All have helped me and slowed the progression of my lung disease Idiopathic Bronchiolitis Obliterans, which is sorta like IPF. These drugs slowed it down enough and gave me more time to wait for a double lung transplant. Now post-transplant I take Imuran, Prograf, prednisone, Noxafil, and Acyclovir as my main anti-rejection and anti-fungal regimen. I also take other meds as well. I take about 37 pills a day.

At the time I had my transplant, I had 14% lung function. Now with new lungs, I have 94-99% lung function and am pretty much back to my normal pre-lung diseased self. I'm back to doing most things that I did before I got sick.