My PM Appt (*Update)

Hey all,

I'm trying to get (slowly) caught up on the board. I've been dealing w/ things here... mostly just not feeling well.... but I did have a good PM appt today and wanted to share.

Last time, she added dilaudid as my BT med... and that's been working pretty well - for my back. I've still been having these awful headaches. She decided that we would try again to get pre-authorization for the Actiq (fentanyl sucker). If my insurance won't pay... we are going to see if we can figure out a way to at least be able to get me a few a month (with medication coupons/vouchers, etc). It's the one med that really works for the migraines - and saves me a trip to the ER.

Since I've used Actiq before, she wanted to stick w/ that vs. trying Fentora. Didn't understand that really, lol... but whatever... it's pretty much all the same.

Back to my other stuff... my blood levels are low again, and they are talking another blood transfusion if I can't get them back up. My hemoglobin is very low. This explains why I've been feeling so exhausted.... "spacey"... and just not well.

All of this comes at a pretty awful time - as school is getting ready to start and I just have a million things going on. But I guess there is never a "good time", lol. So - it just is what it is.

Anyway, look forward to getting caught up here.... I've been reading as much as possible; just haven't had the energy to post.

Hope you are all doing ok today! Take good care.... --Tina

Tina- sounds good but wanted to mention that Fentora is stronger and faster acting than Actiq. But both are great and you are lucky to have a doctor who's willing to prescribe it off label because most will not.

With school starting soon and 8 kids, I feel for you! Haha

Hi Tina, I only have one, 2, and he's terrible to keep up with. My hat is off to you for being able to take care of 8, I hope your getting some kind of help from the older ones if they're able. Please take care of yourself first, my son needs me just like your kids need you. I hope your insurance comes through on that. Take care.

Thank you all for the thoughts and encouragement.... I appreciate it more than I can say.

Iloveoliver - thank you for the information re: Fentora... you were the one that sparked my desire to try the oral fentanyl avenue w/ my doctor... so I appreciate it. I spoke w/ her about the voucher and all of that. That's why I love this board.... I wouldn't have done that if we didn't just have that discussion.... so thank you

SB - same insurance... but she said that per their records - we hadn't tried the pre-auth w/ it...?? I don't know. Anyway, I'm just praying it goes through...

Yes, this PM has turned the corner w/ me.... and I'm SO thankful. But I'm also doing things on my part. She has prescribed 6 dilaudid per day for my back (for BT)... I told her today that I thought 5 per day was enough... and that I might even be able to drop it down to 4. She was thrilled. I think this open communication makes her more willing to try different things. I definitely could have held on to the extra dilaudid.... but I felt that it was more important to let her know my exact needs.

Anyway, thank you all

--Tina

Hi Tina,

I haven't taken much time to post lately either...honestly for a long time, but I saw your post and you are someone who has always inspired me so.  I am so happy that your PM is working with you now and that you are getting some help (even if it doesn't work for everything).

I have a belief in this CP thing (and it is just my personal belief...not one I'm projecting onto others)....it's that if we can get one area of pain or one area of our lives under control, the other area of pain is easier to deal with.  It's when there are too many horrible pains at the same time and too many issues in the home to deal with that we are unable to maintain the outlook to help ourselves and our families.

You have always had the best outlook to me and one that I always look for here.  I know you are a religious person and I am working toward getting back into my religion with renewed energy.  I think it will help everything else in some major way.  I can't change my CP, but when I get one major pain under control, I seem to be able to function more like a normal person than someone with the "poor me" attitude I hate in myself.

Again, you always inspire me because you keep going...no matter what and you have these wonderful children to bless you and your home.  Your memory will live on in these children and their children's children because of the values and the morals you have taught them.  When I look at how I screw up sometimes, I am amazed again by all you do and all the love you give to your blessed family. 

I pray you find the pain relief to allow you to enjoy every moment of your life and to enjoy the blessings each of these children brings to the world every day.

Hey Tina,

Glad to hear your PM is listening to you and working with you. I hope your blood levels bounce back soon!

I don't know how you keep up with 8 kids! I can barely handle 3 cats.

Michael: Sometimes I do think we have the same cycles of not feeling well, lol. Praying you get some relief soon.

RetiredMom: Thank you so much for your kind words... :) I appreciate you taking the time to write what you did. I do try my hardest each day w/ my family.... but, trust me, I definitely have my days, lol.... (just ask any of my family members and I'm sure they'd be happy to tell you) :)

Everyone else: Again, thanks for your thoughts and encouragement.

Take good care.... --Tina

Just wanted to give a quick update....

The Actiq was approved (a bit shocked here)... My co-pay, instead of the usual $15, was $50... but completely worth it compared to what a co-pay to the ER is.... I'm also going to ask my doctor next time if there is a co-pay card possibly. I have one of those for my oxycontin and it knocks it down to $25.

Finally, I feel like I have a fighting chance at dealing w/ these pain issues.

Thank you for the constant encouragement... and I wish lower pain days for ALL of us.

--Tina

Great news Tina! I was thinking that you would get approved as you have previously taken these. I think even just having a pain med around for us to take on really bad days can affect us mentally in a good way. I know I felt that way as the Dr. has written my prescriptions in such a way that I can take x amount on lower pain days and x amount on higher ones. It really helps knowing I have it around if needed.

Big hugs to you (( ))

Tina I'm so happy for you. I was thinking the insurance should approve the Actiq because you've been on it before.

Take care my friend.

love and hugs
Loretta

Tina- whoohooo glad it all worked out for you. If not, I was gonna ask you if you wanted me to send you some Fentora vouchers and a co-pay card. I get my refill on Tuesday and wouldnt mind grabbing you a few but I see it all worked out with the Actiq so that's great.

Spider woman- its up to your doctor and then it's up to the insurance company weather they want to pay for it or not. Fentora has ALWAYS been for cancer pain only. It has never been approved for chronic non cancer pain. Same with Actiq. Most doctors will not prescribe it off label (I have mixed opinions on this) but if they do you will then need your doctor to contact your insurance explaining why you need it since you don't have cancer. It normally depends how bad your condition is and how good your insurance is. My insurance pays $20,000 every 15 days for my Fentora.

It's not to say cancer pain is worse than non cancer pain. I think it's more of an addiction issue since Actiq and Fentora are suppose to be more addicting than others. When you have an end stage of life disease they don't worry about addiction. At least that's the way I look at it because I will be darn if the FDA is gonna try to tell me cancer pain is the worse pain imaginable.

So basically the FDA only approved these two meds for cancer pain but yes they can be prescribed off label if you can get insurance to pay. Actiq seems to be easier to get approved for than Fentora.