Transfusion? Out of Riba :(

So the insurance companies are now hashing it out w/ my dr how to best treat blood levels. Dr. office called today and I took it in the classroom between bells. I'll be darned if a fight didn't break out in the hall outside my door. Not my students. lol. But I told her, "I need energy to do this job!" I didn't even ask what my labs were... Ya just get tired.
Nurse said I should know by tomorrow. I would LOVE a transfusion. I feel sooo good for a few months.
About the Riba - I accidently took an extra dose in place of Telaprevir in my first week of tx so I was a day short anyway. So I took 3 pills total today and that leaves me 2 for tomorrow. Supposed to be 5 a day. I told her I was too tired to fight the insurance any more. She was gonna have to take over. We'll see. I do have a 1/2 injection of Pegasys cause I split last weeks using an insulin syringe. (Dr. ordered 1/2) Procrit is supposed to come too. It got complicated so fast.

I'm hoping for a shipment Friday of all my meds and an outpatient transfusion Saturday. I'm just rambling. Staying alert at work w/ coffee. AND my new fave drink - orange juice!
I'm happy to hear about all the und. We're gonna do it. I've enjoyed reading ur posts. Lotsa cool new info.
Ain't life grand? Really. In spite of it all, it's good to be Karen. I had a student write an essay today saying he will be the first in his family to graduate from high school. I wouldn't trade the time spent w/ that lil guy for all the tea in China.
Peace, Karen :)  

[working dog]

karen...thats some story...i'll pm you.....billy

[researchmonkey326]

Karen:
Your attitude is inspirational.  Even through all of this you have a sense of humor.  You deserve to have this turn for the better.  Positive thoughts being sent your way.
Debra

[his3707]

Wow, your handling it a lot better than I could.  I would be A$$ basket case!     Hope you get all this straightened out soon.   We really get tested in a big way doing this treatment.  Mentally, physically, emotionally, spiritually.   Way to hang on to it!

[James10500]

You must be a great teacher,cuz you inspire !

[crossroadsec]

Well today I used my harshest screechiest teacher voice w/ the drug company, They hope to ship tri therapy tomorrow. Still arguing over how to treat anemia, platelets, etc. Tommorrow I will be riba free. But I do have a couple of extra telaprevir and 1/2 peg shot. Madder than an old wet hen. lol.
I'll have to admit, as long as I only have to drop riba n telaprevir for 3 days, I'll be okay, right? I'm believing that with my whole heart. So disappointed in the system.
Karen :)
So question? Maybe this should be a new thread. Maybe I don't wanna know. But missing 2 days of telaprevir won't hurt will it?

[can-do-man]

Oh jeez, sorry about the mess they have you in. Have you talked to your doctor about missing the Incivek? This is from clinical care site.

Telaprevir cannot be reintroduced once it is withdrawn. Therefore, it is imperative not to stop therapy too soon or too late, which requires ongoing assessment of patients with rash in the office to determine the extent and severity of the rash and to guide management.

http://www.clinicaloptions.com/Hepatitis/Annual%20Updates/2011%20Annual%20Update/Modules/DAA%20Naive/Pages/Page%206.aspx

[lynda607]

Karen, unfortunately if you miss 2 full days of Incivek it could very well be a game changer.
To prevent treatment failure, the dose of Incivek must not be reduced, interrupted or restarted.  You're already on reduced peg and no ribavirin so interrupting the Incivek would would not be conducive of a continued UND and ultimate SVR.  

If you ran this by your doctor or called the Vertex hotline I'm sure they'd tell you the same.

[crossroadsec]

Well guys - read ur posts n raised some hell. You got me scared. I will NOT give this ip so easily. I was PROMISED that I would be able to pick up Incivik at a local cvs pharmacy near my school. I have tonights dose n tomorrow mornings. They can fight over the RIBA n procrit vs transfusion.
What makes me Angry is that we're down to Rx people and their egos trying to tell a transplant team w over 40 years combined experience what to do. They just ran into my ego. Im gonna tell em ALL that Linda and can do man said they better fill it. Haha! I needed to lol. Too much crying today...
Thanks guys. Xoxoxoxoxoxoxo Karen :)

[eureka254]

You deserve a big hug there, Karen... hang tough.  I know it's hard not to get angry... but trust in the fact that usually, doctors have bigger egos than rx folks ;).
When I run into those bumps in the road... my personal mantra that makes me pick myself up and keep moving:  my kharma just ran over your dogma.
You just keep driving, skirt, heels, and all, you hear?  ~eur

[can-do-man]

Hi Karen, hope you realise that my only intent is to see everyone have the best chance to clear this virus and gain SVR. I sure don't enjoy posting things that sounds like a bummer. I fought this virus over 5 years, and being cirrhotic myself i knew this last time was maybe my last best chance. We might not have the time to wait 3 to 5 more years on new drugs that might or might not pan out.

I like your fighting ways, give them hell, hopefully they will understand this is serious stuff. Wishing you the very best going forward.

[lynda607]

As can-do man said, this is serious stuff, a make or break situation and you realize the  negative impact no Incivek for several days can have.  Why in the hell the RX people can't is beyond comprehension.

Wondering if you spoke with someone at Vertex they could do a some intervention on your behalf or perhaps overnight you a couple blister packs until things get straightened out.  I'm sure they understand the gravity of the situation.

Good Luck Karen, hope things work out.

[crossroadsec]

Hector jus messaged me the vertex number. they're one of the people who promised a shipment Tuesday. I've had so many promises.
I'm calling every local CVS pharmacy in my area. So far, non in stock. It would be Monday. argh. Thanks for the support guys. I like the my karma jus ran over your dogma.  I'm there. xo Karen :)

[crossroadsec]

I've called every cvs pharmacy in the state n they can't get me telaprevir til next week. I refuse to let it end this way.
I've got meetings in the morning, but if I have to take personal phone calls and get fired, I will. I'm not so worried about the riba for a couple of days. the PI scares me. xanax girl tucking in. Hopefully vertex will call tomorrow. I said a cuss word in my head. Felt good. Cussin n praying. Now there's a combo. Double shucky darn. It's a crazy couple of weeks... Karen :)

[beeblessed]

Keep fighting Karen!  Cussin n praying......LOL!!  I feel for you and pray the best outcome for you.

[lynda607]

It's not like you don't have a million other things to worry about right now but I wanted to bring to your attention that concomitant use of alprazolam (xanax) and Incivek increases exposure to alprazolam. Clinical monitoring is warranted.  You may have to adjust the dosage because Incivek increase the effects.

[flcyclist]

Karen, so sorry to hear of the med delivery concern.  This kind of stuff will certainly stress you out on top of everything else.  Is there any chance that either your Hepa has a small quantity at their office in case of emergencies like this? Or possibly your office could contact other local offices to inquire just in case you don't get your delivery in time?

I was in a similar situation with the Inf and later learned my GI has a small stash just for these situations.  I wish he told me earlier cause I was becominig unglued.   Hope this all resolves itself and you have what you need in time.     Best of luck to you.   We're all in your corner.  

[paen53]

Karen, I wish you the very best in getting the meds you need. This has got to be so frustrating!! I remember a similar situation while I was on tx and how stressful it was co-ordinating insurance companies and pharmacies. As flcyclist pointed out, perhaps the office has some stock on hand. I was able to get some Riba that way in a pinch.

Which brings to mind, that this is another issue that needs to be brought up with the Dr./trial people before tx - just what the backup would be in a situation like this. Especially during the critical first weeks of tx. I always thought that if I did my job in putting the order in on tike and before crunch time, that things would flow smoothly. Not so....It just takes one person to drop the ball, one mis-communication between the parties involved to wreak havoc on our stress levels. Oh, could they but walk a mile in our shoes and realize the importance of these meds.

Hang in there, Karen, Pam

[frijole]

Karen
I am so sorry you are having these problems with the pharmacy -- or the insurance company.  I really don't understand the problem but that is neither here nor there.  The first time I treated my blood was monitored by a hemotologist.  She had no problems ordering the procrit and I think it was because, being in the oncology department at the hospital, she used an oncology code for the rx for the procrit and neupogen.  This time I am treating with a hepatologist who wants to be in charge of everything.  I hope I don't have issues with getting the procrit when it is necessary.  This time too I am dealing with a mail order specialty pharmacy.  So far, so good, but I have  a lot of anxiety about my meds not coming at the right time.  

I hope it all works out today.  I hope some compassionate person from the pharmacy or at Vertex has overnighted Incevik to you.  My best wishes

frjiole