General
Angry voice
Updated March 10, 2023
in General
I am tired of hearing there are no alternatives to Tacrolimus, steroids, MMF and Cyclosporine… those drugs are 20-30 years old and we deserve better! In cancer there are new drugs every year, new companies being financed every month and pts are being exposed to clinical trials en masse! We have nothing in our space, and I am fed up with the side effects, the toxicity on my kidney and the answer that the FDA just won’t budge when it comes to surrogate endpoints. We are not even asking for surrogates at this point, just to approve composite endpoints like the European authorities did in December of 2022! How can we, in the most developed drug development country in the world, be behind???
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All of this!!!!! So much!
you are speaking my feelings exactly as I am currently siting in the ER getting re-admitted to the hospital with next to zero WBC and a new chest infection. The extremely low WBC is causing my drs to have to completely re plan my drug regimen but with like 5 options even my doctor is angry like we are!
I am with you!!! My creatinine has been on the rise over the last 4 months. It was 2.07 last week. They lowered my envarsus and now my trough level is 3.7, so they're going to make me increase my dose, but then my creatinine dropped to 1.9, so we know it's the tacro that's destroying my kidney. Blah!!! We NEED alternatives!
This is so frustrating!! Its also very frustrating to me that my pharmacist didn't discuss any of this with me. I had to do my own research and figure out that the side effects of the drugs that I am required to take will also be detrimental to my new organs. I am still way to new on drugs to see a real impact but I know it will come. It's fascinating that so many people need organs and we aren't prioritizing protecting the ones we have.
I don't know the answer here, but I want us to keep asking the question!! How DO we get access to better drugs?! Do we think that the US will follow European authorities? I know in medical devices the CE mark is granted and sale in European countries happens earlier than getting 510(k) to sell in the US.
Oh yes to all of this! We need alternatives that will prolong our lives without creating new problems like attacking the very organs they were designed to protect. @TServold. I'm curious about what you've found in Europe? I have friends in London, Paris, Germany and Norway and they are on the exact same medications as I am, with the addition of Prednisone which they are kept on for a lot longer than we are in the US.
Transplant Patient
I'm in Canada, and I know some of the drugs differ here but I don't think by a lot. I'm only on advagraf (long acting tacro.) In my case and from what I understand talking to those in similar situations here, there does seem to be a pretty big desire to get you on as few drugs as possible as quickly as possible. I was off cellcept within the first year, prednisone within 3 months
Same. I'm on tac and myfortic (my third immunosuppressant due to side effects...), was off prednisone within a few months. I agree that I've seen a big desire to get us on as few meds as possible - as long as we respond well and our labs stay on track.
Transplant Patient
true! obviously there needs to be responsibility and accountability in weaning off meds. Everybody just randomly stopping their meds wouldn't be good. I'm acutely aware of the privilege I have in that I've adapted well, my body responds to the meds really well. I don't know how things would be different if that wasn't my story. And I'm really glad there are people out there advocating for better drugs, because it is definitely not my area within transplant advocacy.
I think you perceive based on your experience, which is why it can be so valuable to learn from one another.
Absolutely!