In the hospital at 2

Yes it is the worse! dexmethazone was seriously horrible ask for a sleeping pill they will usually allow

Good idea. Will have to wait until second unit of platelets are infused and see if there is any night left to sleep.

Well that was a new experience I don't want to have again soon. Nosebleed after after upgrade to dexameth 20 mg. Hemo had me admitted. First they packed my nostril then I got two more units of platelets. Nose is still dripping some blood but not as bad. No new bruises or petch this morning.

Not much sleep last night between IV beeping and wired from dex.

Still waiting for today's CBC result. Plan to get out by day after tomorrow. Doc is still fighting insurance for Nplate. He has plan to get me some Monday at the latest. Told him we should hire John Grisham to go after the Ba$tard$.

Hope you are doing well and symptom free today.

Hope your doing ok!

Very happy with pm draw of thirty. Even better nosebleed is resolving. Not yet un-packed but no new blood. Petech is gone again. Think I may get dismissal tomorrow. One more day of dexamethazone then back to Pred. Hemo has plans to get me Nplate Mon. They still need a release from insurance but will win. Just don't want to wait any longer.

So I just have to hang on to some cells until I can turn on the marrow factory.

I hope you are doing well.

Been tracking my on-line stats and medical plans at hospital. Steroid insomnia is bugging me again. The Norco I had two hrs ago didn't cut it and too soon for more.

The official medical condition I am admitted for is nosebleed. Which is giving me the giggles it sounds so trivial even though it IS NOT.

It has bled for over 24 hours. Feels sore but no leaking fluids now so still have plans to go home. Did middle.of the night blood draw. Hid my IV port under the covers and offered other arm. She pulled tape up too close to port the time before though I asked her not to then panic struck and I blurted out DON'T DO THAT.

So don't want to redo IV on this trip. Running out of places.

Checking my weight daily. Down five pounds since Admission. Not likely fat. Too bad but not hurting kidney function so am ok with it.

Much resolution on active bleed so not too concerned about count. It just would be nice to start NPlate with something in the system.

Does anyone have history and recall of startup ? Never tried it before.

Only bad thing about long remission that I know.of is being out of touch with current treatments.


So happy to have exceptional local Hemo.

They gave you Norco for sleep? No wonder it didn't work.

I hope you get out soon, Cindy.

Going home today! Counts held at 25.

First Nplate tomorrow morning.

Looking forward to stopping Dexmeth and then tapering Pred too. I know you are a regular with it but my blood sugar and nerves don't tolerate it. Specially it messes with my thinking process. Killer on work with computer software where faster is NOT better.

Thanks, Sandi

Happy to hear that you are heading home Cindy! The nosebleed sounds awful, I'm going to stop whining about my monthly bleed issues after reading about your hospital stay.

Insurance is totally ridiculous, but I'm so glad it sounds like you get to try the Nplate tomorrow. I really hope that it works well and quickly for you. Then you can stay home and not have another hospital visit

No it is not pretty but at least I don't get cramps.

Scared the little nurse with a gusher when she pulled the IV. Most floor nurses have never seen this.

Feel like a teaching nurse. Ha ha.

Think Dan Ackroid on SNL imitating Julia Child and bleeding out on PBS.

It is all a matter of doing what you have to do to get on with your life.

Complain about your monthly as much as you want until it is gone. After the change isn't so bad in that way but it has surprises too.

Thanks for the pep talk.

Still holding at 22. First Nplate treatment. Last Dexamerh. Back to Prednisone.

Fingers crossed.

Hi Kellirae- hope you are doing better! I know how it is with insurance and Nplate- good luck with that!

Cindy you asked about Nplate. I was on it from 2014-2015. Its my favorite ITP drug of any I've taken. Everyone is so so different when it comes to side effects, so this is just me. When I first started I had an occasional headache, felt mildly unwell but could still function. That lasted only for a couple days and by the second week I felt good. My counts came up the first week on Nplate, but often it takes longer. I started at 6K I think and up to 12K on 1mcg nplate. Next week 2mcg then onto 3mcg which brought my counts to 50K. We stayed at the dose of 3mcg and counts stayed around 50K. Nplate seemed to lose some effectiveness after a year as my counts dropped to 20K on the same 3mcg.

I quit Nplate for a while(long story) and started back on it 4 weeks ago. I haven't responded to it yet this time. I'm was up to 3mcg and counts were 1K last week. Plus taking 10mg pred which used to bump my counts way up- its a bit of a concern that I'm not responding to these drugs. I am fortunate to not have symptoms when my counts are very low, some petechiae but no real bruising, no bleeding. I'm now on 5mcg Nplate and that seems to be doing something.? We shall see on Thurs. I'm not having any side effects.

Hi Posey,

Thank you. That was a lot of info on your Nplate use. I am glad the side effects were not bad for you. I would love the same. I wish you had better results this time though. There are a lot of variations person to person and even day to day with the same person. Just part of the frustration with this disease.


Were you able to use the financial aid program on the treatment co-pays? Hemo's office set that up for me. They are so used to working with is shell shocked folk.

I have had lots of offers for help from co-workers but hesitate to burn any this early. Got back on this rodeo 10 days ago. Know how long it can take you to get off if you can.

Only good thing is this is not an invisible disease like diabetes, arthritis, lupus, and so many others that have walking sufferers no one knows about .


I am so thankful for this support group and your experiences.

High counts to you or at least few symptoms and no active bleeds.

Cindy

Cindy you asked about copay programs. Yes, financial assistance programs been so so helpful with these ITP drugs! I have gotten assistance with Nplate, Rituxin and Promacta.

I'm on Amgen's First Step program, a copay assistance for Nplate. Its been great. I believe they pay any copay charges for the drug but not for office visits or labs, though it seemed they also helped me pay some for office visits- not sure, its complicated. My maximum out-of-pocket when I had ObamaCare was $2250. I reached max oop the first month on Nplate- easy to do with injections at $4000 a week!

So after the hemo's financial aide office worked their magic, I ended up paying only $695. for that month and Amgen paid the balance. And since I had reached max out of pocket, all my medical the rest of the year was paid by insurance- nice.

This year I am off ObamaCare by new government policies- sad, I miss it. I am now required to get insurance through my employer. Its not nearly as good with a much higher max out of pocket of $5500. I'm not sure yet how the financial is going to play out. Been on Nplate for 4 weeks and haven't gotten any bills. Hoping that Amgen will again come to the rescue!

Posey that is a high out of pocket.

I had employee insurance prior to this instance of ITP. So no changes. Just fights for coverage.

Haven't even gotten to the normal monthly bills for March yet. Doing a Scarlet O'Hara on medical bills. "Sigh, I'll think about that tomorrow."

Making lots of to do and don't forget lists for when I can deal with stuff.

I have a draw in the morning, and delivery of Nplate Thursday.

Wish I was sleeping but second dose Pred I don't expect much.

Thanks for the info. HIGH numbers for everyone.

The other part to my Nplate and health insurance story was that it took a full YEAR to get Nplate approval from Anthem Blue Cross. They kept denying it saying it wasn't necessary- I still have my spleen so thats a factor.

But I was receiving Nplate weekly through out the year so the cost was piling up and no one paying for it. My hemo's financial office told me repeatedly to not worry, they were working on it but how can you not worry when you get bills for $50,000?!

I wrote an appeal at one point, and the financial office kept on the insurance company until finally it was approved- whew that letter of approval was a great relief.

Wow that kind of fight for coverage can be devistating. And you can't pay and hope for reimbursement. It SUCKS.


I woukd not be able to handle that while trying to get well. Makes you wonder if Insurance plans stuff this way on purpose. I have read Grisham's Runaway Jury.

I had recheck today and still have 17. Happy about that. He wants another check on Friday. Trying to keep me out of hospital for the weekend.

Nplate on Monday. Should have meds delivered tomorrow.

Thanks for info and support.

Yes absolutely! the insurance co was purposely dragging their feet. Most people would give up sooner- it was the wonderful women in the business office who kept at Anthem Blue Cross and wouldn't give up. I wanted to stop treatment at one point because the cost was piling up, but they said no- to not worry, it takes time and they'd handle it.

I got a letter at one point stating Anthem's hemotologist had reviewed the case and declared Nplate was unnecessary for 3 reasons. My counts need to be low- 1000 wasn't low enough? I needed to have failed 2 treatments- I had failed pred, dexa, rituxin, promacta gave bad side effects. OR I had failed splenectomy- well hadn't done that, so that was a sticking point which it often is.

That is insanity. They are certainly not into patient care. Just $$$.

If the ceo had ITP it would be different.

Thinking Bucket List movie.

Count is UP to 39. Highest since my relapse. Almost double from Monday. So happy.

I suspected it would be as bruising is healing.

Had a sleepless night last night. Going to rest as much as I can until bedtime.

Come On Light at the End of the Tunnel!

Feel well and high numbers too all of you.

Looking good, Cindy! Hope to hear more good news soon!

Thanks Sandi. Me too.

Hemo is having a PDSA group mtg Tues. going to try to make it.