Zortress (everolimus)...new Antirejection Med

Mike's post Treatment appointment was today.

He has bloods after 8 weeks post and 12 weeks post TX and then they will declare him cured. They did say that about 10% of folks may relapse. We shall see, nothing is for sure.

We talked about Mike's chronic rejection. He has had this show up on the last two biopsies. They did not know if it was Hep C or rejection going on,but they are pretty sure it was rejection changes they see in the cells. I am not too sure of the science on that and will read up when I have a minute.

He also has moderate kidney disease. And his kidney numbers have been creeping up. His nephrologist is aware and keeping a close eye on things.

They took Mike off Cellcept, tried Myfortic, and have taken him off both because they feel the rashes he has been having started before treatment and we likely from the Cellcept and My fortic which are two forms of basically the same type medicine.

Now they want him to change to .5 mg prograf twice a day and .5 mg of zortress(everolimus) twice a day.

We don't know this one and have some research to do. ON the way home I learned that this is new last year and mostly for post kidney TP, used also for liver TP folks. It is kidney sparing which is why the docs like it. With kidneys they use everolimus with cyclosporin and for livers they use evrolimus with prograf.

BUT, it is in the same family as Rapamune and those of you who are here a long time may recall that Mike is HORRIBLY alergic to Rapamune(sirolimus). He wound up in hospital after he used it for 3 days with mouth sores that would not heal. He was a MESS. And his liver numbers went crazy.

Now they are saying that some who have tried Rapamune don't have the mouth sores with this one, but, there is that chance.

Anyone know anything about this?

Research needed before he begins the meds.

It can also cause high bloodpressure, so he is checking wiht Cardiology to see if they have any experience with it.

Well, I have a meeting and can't linger...more tomorrow.

Carol...Caregiver for the moment, and not a MOD.

Hi ML,
Back online as Peter said he doesn't know how, or why I was knocked off HW.

Now for your post. All anti rejection meds have pretty bad side effects. Prograf raises blood pressure, makes you more likely to get skin cancer, lymphoma, depletes calcium, become diabetic, etc. I'd be interested in hearing about xortress, perhaps it might be better for me. I'll ask my docs. If Mike is having rejection problems, it's worth a try. He could always go back to his old meds if this isn't working. We're lucky to have new meds. At one point, all they had was prednisone and then they even tried zapping patients with x rays, which killed many of them, due to having no resistance to any diseases. In a few more years there will be better meds. They're testing a monthly IV med at MGH. Go in every month for an hour or so and no daily meds.

___________________

David, I spelled the medicine's brand name Zortress correctly in my header and replaced the Z with an X within my post. I have corrected my post and yours. Connie is having a fit in the afterworld...she followed behind me way too many times with emphasis on at least spelling the MEDS correctly.

Glad you are back online. MamaLama

Post Edited By Moderator (MamaLama) : 6/6/2014 5:35:22 AM (GMT-6)

Interesting about new med. Remember that whilst it is of the same group Mike had so many problems with - it isn't the same med so keeping fingers crossed everything will be well.

It is weird how reactions work. For example quite a few people with AIH get reactions from azathioprine yet are fine on mercaptopurine. Yet the body converts azathioprine into mercaptopurine - that is how similar they are - just one molecule difference can have a big effect.

Fingers crossed here.

Ann

Well, there have been NO posts from anyone about Zortress/everolimus.

I have looked all over the Internet and find tech articles and stuff about studies and warnings not to take it if you are allergive to Rapamune (he is)...and no other boards, even kidney ones. So...what's the deal? Brand new?

The insurance is balking so he hasn't started. We want to go away the 19th for a long weekend. I am hoping he doesn't start it til we get back.

Night all,

Mama Lama

I found this about Zortress:

Zortress - Newly approved anti-rejection drug

It was on the TransplantBuddies.org site. It is only talked about a little, but hope it helps!

Tuesday, June 17, 2014. Mike's new meds came today: Zortress (everolimus). He is to take them with the Profgraf morning and evening to boost the antirejection action. He only takes .5 AM and 1.0 PM of the prograf and it isn't holding him I guess.

We are both scared of the sides as I mentioned before. The papers that come with the meds are clear...don't take it if you are alergic to rapamune. Well that rapamune stuff is engraved on his ID bracelet...he had a horrible reaction and wound up in the hospital. So, we shall see. He starts on it tomorrow.

And Thursday we are going on a short vacation to Connecticut. He is planning to play golf with his old work friends and who knows....maybe we'll be at Mass General instead.

I'll let you know how this works out.

Mama Lama

I knew you were scared by your email ML, but didn't know about the rapamune allergy, no wonder you're biting your nails. Hopefully it's an allergy he outgrew?! Keeping fingers crossed as your much needed getaway approaches :)

Hugs,
Mae

Enjoy this time away, and if it it helps....even my eyes are crossed for Mike to tolerate Zortress. Big Hugs

So far so good. I've been afraid to post for fear I'd jinx his good fortune. 😢😄

I'm back at my desk in hot humid Florida and though I've read all the posts for the past week, I have been responding only occasionally from my phone. Those who know me, know very well that I am not good at that texting.

Mike continues to do well....he had his first post treatment labs yesterday, so fingers crossed on that SVR thing after the Sovaldi/Olysio. His skin is looking better, even that stuff on his scalp seems less angry. No mouth sores...but we are being really quiet about that...for fear of angering the Zortress gods.

Thanks to our regulars and newbies for holding down the fort while we got away for a nice break...beautiful New England weather, plenty of conversations with family and friends. Perfect.

Hugs,
Mama Lama