Sunday, July 20, 2014

Entyvio, New Miracle For Crohns?

So Padre came with me to the GI.

It's fun to come here and make light of life but tonight I am thinking a lot about this new drug, hot off the press, and can't sleep cause of the infection prednisone has helped me enjoy the last few months in my esophagus. (finally got it diagnosed. And feel I lost at least four to five months of my life! Hello! Why do we live in such a modern time and still can't figure out some stuff? Sheesh. Such is life.)

Those of you not on prednisone, wondering if you may be on one day, or just plain don't find it fun to talk medical jargon; this post won't mind if you skip it. Go read one from a few years ago when I was doing a really cute garden and uploading personal pictures on a regular basis. I actually have had to do that myself (read my own past posts) and they are funny.

Okay, so like I said, Padre comes with me to the Dr. I brought him kinda like the reason why people get dogs and signs to say: Beware of Dog- it makes them feel safe. Or it is kind of a hobby to raise and breed fercious dogs. In Padre's case, his bark is louder than his bite, and he asked only a couple questions and pointed out that the Mumu I put on was inside out.

Dr. comes in after being out of town for couple weeks and not there for the camera that scoped out the infection that I requested when I had stumped all of his collegues with the pain in my throat and heart burn that felt more like a hole in the airway had been singed at the local welder's, and he says this:

A new drug is available. The name: Entyvio.


Yeh, I know. A whole slew of new medical terms that J. and I will need to learn and eventually be saying to people like we were raised in its native tongue, pretty soon. IF I decide to take it.

After some research, I found absolutely nothing. No forums telling how people feel on it, etc. Just that it is out.

I did find out why the word is so foreign and that is cause the drug comes from the biggest Pharmaceutical Co. in Japan, Tekeda.

Might want to buy some stock in it.... unless the side effects of it are bad. Which there is the usual slew of them.

Anyway, back to the GI- he rattled off that the med "addressed the genetic cascade of blah, blah, blah C3PO, blah, blah, and those who have been on, not continued to respond to the biologics, oh and (here's the kicker) had to BE ON PREDNISONE for most of their stinkin' lives were who this drug was for.

It was as if I had walked up to a medical buffet, put all my salad toppings on it and returned to my seat to eat it with out worrying about my insides not being able to digest lettuce! Meaning it was happy news and could not have come at a better time.

And a drug that seemed TAILORED for me.

Which must mean there are a lot of me-s out there that have done all the big gun drugs, have been immuno-suppressed for almost half their lives, and have the common prednisone stories to swap in order for a Big Pharm from Japan has made a break through med.

It almost seems too good to be true.

But he said that many are having the response from it that they did with Remicade- which was a ground breaking drug back in 2000 for me and many others. It took a three year flare and made me feel alive again.

However, I am not in my early twenties any more. I have a kid. And I don't know if I can continue to enjoy the same old side effects like migraines, sinus infections, other infections, and/or possibly PML. Did I mention I have a kid? Named J.? That I blog about and who I think managed to come home from his scout out with out unpacking his pack AND taking a shower. He's lucky I had a bad headached and allergies and couldn't smell.

PML....  not to be mistaken with PMS- which I thought was bad growing up and was glad for Ibuprofen. Nope, PML

It is short for one of the  new and longest words I have to now learn. AND it helped me realize that Entyvio, was the drug that I was almost in the third, double blind study for at the U some time ago. But cause I didn't want to roll the dice and pick a number of mgs. of Prednisone to stay on, * I wanted off it soo bad and they would only let you go up to 20 if you went into a flare. Which could be bad if you wanted to go to the hospital and possibly get relieved with IV prednisone. And if you were the Placebo group.... just not the odds I wanted to play. They called it Simponi.

PML - a rare nervous infection of the brain- is 99.1 percent fatal or something happy like that. The rest? 

 are vegetables.
I don't know about you, but I would rather grow them than be one. Yup, I tried to imagine myself drooling out of the side of my mouth or giggling as I engaged with my parents (the only ones who really love you and want to keep you around if you are smiling and a vegetable) when they came to the nursing home that is only slightly more staffed than the local hospital. And with no credentials. Cause you are a vegetable during a time in the world when kids want to buy Ipods and play Mine Craft rather than be interns at a vegetable garden, er I mean nursing home..

Good grief, People! I mean, Readers!

Actually, I don't know what the percentage is and you get tested for something that helps it move along every six months or so. So you can take En TV io for two years, get some great quality of life, help your kid learn some more math, and then be back to square one again. Except now you are two years older and done a drug no one knows what the long term effects are.

I guess we all face being a cucumber or squash eventually in our lives. I mean, a very healthy friend I knew had a heart attack. Some get cancer. Others get something else. Why should I think I could somehow escape something?

I guess I sorta thought I'd put "in my time" so to say, after twenty some years dealing with an auto-immune disease and figured someone else might want a turn. And my bones are really taking a beating from being on the prednisone.

Which, by the way, I hope those of you who are reading me and have health problems are not judging is all bad. Prednisone saved my life. Ruined it at times, but saved it. And it saves others. If your kid or someone needs it on a short term basis, to say, help during an allergic reaction, don't be afraid.

Yes, I have lamented its attributes on here many a post. But it is there to help. Okay. I have a headache thanks to it.

It will take days, weeks, possibly months to get my insurance to approve the drug. And then days, weeks, months to see results. So I have time to decide and think about which kind of vegetable J. would want to visit in a nursing home.

I didn't know if I really wanted to go that way. At least for a study. I was willing to let others trial that for me. BUT, they let all of Europe know in May that it is now treating UC and Crohns.

Ugh. I can almost taste the feel of a Big Gun Med coursing through my veins this early morning. Not a favorite feeliing. But my disease has progressed and I need of the toxic prednisone now more than ever.

I can't believe I have been on it and have permanent damage from it. Now that I am older, I am starting to see the side effects that I read about years ago and with no qualms, headed into the unknown for the sake of my self, having a family, and mankind. Aren't I brave? Yeh, right. I didn't even really think about my choices affecting anyone else until I had J. and THEN, knowing it could be part genetic, I prayed my actions meant less suffering for him in his life. If that was all that my  measly time spent on prednisone afforded me, then I was glad.

The molecular parent to Entyvio is Tysabri- A drug for MS patients and also some Crohnies have done it.

-- Padre is trying to tell me about how he found the cabin of my third great grandfather, so I guess I gotta stop blogging. It is really late and he's just finishing up. He should just create a blog.

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