Hilary3

I hope the dex is helping you, it did nothing for me.  Then I had IVIG which made me pretty sick.  Now on prednisone which usually works for me.  The steroids can give you insomnia and fatigue.  But having a 3 month old would definitely cause that!

This was my first treatment for itp. 4 days of dex got me up to 230’ today. I was supposed to start prednisone for 20 days but was so disoriented from 2 days of it my husband had to drive me to my appointment. I’ve now switched back to dex 8 mg a day for one week then drop to 4 mg a day for one week. Hoping the side effects of 8 mg are more mild than the craziness I had with prednisone! Sorry none of this really helps yours question dru-is pred helping? 

RR01 what does your hematologist say?
Are you having your surgeon confer with your hematologist?  

I agree with Mel. Surgeon needs to contact haemo for advice 

Hillary how is the dex treating you?

It has been a rough ride! I am finishing a week of 8 mg so 2 pills a day and no prednisone. Go for cbc tomorrow and hopefully drop to 4 mg. I am so tired but also having insomnia. Some days I feel like I’m going a little crazy between restlessness, rapid heart beat and just being so tired! Ready to be done with this so hoping for good numbers tomorrow then will go again on 10/24 to see if I can stop completely. 

I had a platelet level of 2 back in 2020 when ITP became a thing for me, out of nowhere, and put me in the hospital for 10 days. Ultimately, after failing to respond with prednisone, IVIG, platelet transfusions it was decided to give me 4 Ritux infusions along with weekly Nplate injections. I remained on Nplate, an injection each week, for three and a half months. My platelet levels had risen by then to well over 100 so I asked If I could discontinue the injections. My Hematologist agreed and it has now been nearly two years since my last injection. My platelet level has been near 200 for over a year. I am 56 but in my case there has been no negative experience having stopped the injections. It is my understanding that Nplate assists in the production of platelets within the bone marrow. In my case whatever triggered my ITP may very well have run its course and having done so my body is no longer in need of any assistance in stimulating platelet production. This is my case, will not be the same for everyone but thought I would pass along a positive Nplate cessation story

I had surgery with low counts with platelets given during it. Another time I had steroids up until two weeks before. Surgery was then done quickly before my count came back down. I had to be off steroids for the surgery because it hampers wound healing.

Hi.
I have recently moved to the US. After an appointment with hemo (it was a headache convincing them that I need an urgent appointment), they told me they would start negotiating the insurance. I'm a student and my insurance is UnitedHealthcare through my university.
Prior to attending here, I also emailed the university's insurance office and they double-checked with the insurance that it would be considered and I already have the emails.
Ironically, it seems my insurance has two branches or benefits, pharmacy benefits, and medical benefits. Nplate is excluded by my pharmacy benefit, but J2796 (which is the injection code for Nplate) is allegedly covered under my medical benefits. Strange

Anyways, now Optum delivery has been initiated and they delivered me 4 vials of 250 MCG. They told me the copay would be $1700. Optum is a pharmacy branch of united healthcare... But they are not exactly the same company. I had several concerns that I'll write them down here:

1- There's now a $11200 bill under processing for which the Optum is the provider. This has made me anxious since I'm worried is there any way they may deny it? I have itp and the hospital and the doctor is convinced (my medical records and later tests showed low platelets). Also when the doctor requested prior auth to the insurance, they came back and said my plan doesn't require nor accept prior auth and they reserve the right to exclude anything. The nurse said it is something positive and it usually means the insurance is going to pay. Also, she said base on her negotiations with UnitedHealthCare and Optum, she is convinced I would have coverage for Nplate and what she has written down from all these calls and negotiations on my chart is a legal document and if the insurance ended up not paying, it is sueable. The hospital could also write an appeal to the insurance in case needed. During the visit, the hemo told me that he knows another student which receives this Nplate at home (where I'm currently receiving it) and is doing ok. He said theoretically the insurance would cover that and they will be working on that. It is frustrating and confusing and scary (having such a bill under process biweekly and not hearing back for a month). Does anybody have any idea about this case?

2- My annual out-of-pocket maximum is $1800. Is this the real maximum amount that I would pay out of my pocket during the year? I think it might be too good to be true, LOL. Since on the current schedule, it seems the medical bills would be $330k per year. 

3- Regarding Amgen's first-step program. They gave me a copay card for up to $10000 per year. But now on the first bill, UnitedHealthcare has used that copay card and the paid amount has entered $0 for me. Does this mean that they will never consider such copay assists as my out of pocket? If so, then what's the point of this copay card? Given the high price of Nplate, $10000 will be exhausted within a month or two and patients would eventually have to pay the maximum out of pocket sooner or later.

Given all these, I had the gut feeling that it would be ok and I ordered the second shipment. Hope all goes well!

And one last question, what is the price of 1 vial of Nplate 250 MCG? It used to be like $1100 a couple of years ago but now it seems it is around $2200. Is that right? Why such a huge increase?

P.S: I don't know if Hal is still around or not. I hope he's doing well. He is the best one who could answer this

I have heard that about dex Hillary - I was hoping maybe it wasn't going to be so rough for you!  Having been on prednisone for almost 4 years I know what you mean about the insomnia etc - I'm sorry you are going through this.  Hope you get good news after your CBC tomorrow!!

They were 179 at the 10/18 check. After the pulse dose last week 10/11 they were 230. So now I start 4 mg dex and check again on 10/24. Hoping they stay in normal range and the dex side effects lessen. I am going to the beach next week so would like to relax there on no steroids 

179k is super!  I would rather have that then a jump to 230 as that is quite an increase.  Most of the us old-timers feel a decent/good count is what we strive for.   A trip to the beach sounds wonderful - enjoy!!  And keep us posted!

Hey, dru.
Sorry to hear you relapsed. Hope you get back to high levels soon!
Dex pulses are a sort of treatment to my knowledge. I have not got them as an outpatient and they were always used in case I were hospitalized for bleeding.
Problems for me were gas, insomnia, euphoria, and muscle cramps, especially behind my legs. I think Ativan may help manage high-dose steroid side effects (ask your doctor since it requires a prescription). Also walk regularly to help with the cramps. I never achieved remission on those but some people got good results with them. 

Has anyone on long term steroid treatment seen a sustained effect on their adrenal glands and their production of corticosteroids?
If so, how long were you taking steroids and at what dose?
I have been on N Plate for three years remaining above 100,000 with a dose of 1mcg/kg. My counts are up and down like a rollercoaster ride sometimes in the normal range above 140,000 and sometimes not. I consider myself very lucky. I have suffered with arthritis for over 50 years and I had a severe flare up recently. The issue is what to do for inflammation? One thought is steroids at a low dose less than 5mg per day whenever flare ups persist. If anyone has had success with anything else please let me know.
Thank you in advance for responding.

On  weekly blood tests my  last 3 counts were 21, 14 last week and 11 today. I started with a cold last Tuesday which lasted about 3 days, so I am not convinced a cold is to blame. 
I am to continue on trial and see consultant again in 4 weeks. If no great improvement I will probably come  off the trial. I am having to take anti emetics every day to suppress the nausea. 

We have today discussed future management. Fostamatinib was licensed over here 5 days ago.
When I was on the trail for it all those years ago (Feb to Sept 2015) I had to maintain a count above 50 which I failed to do. During the whole period I was on 5mg Pred a day as I am now. However with fortnightly bloods I only had 1 count under 20 and 10 above 30. I would be willing to go back on it and see what happens.

Avatrombopag is awaiting licensing, hopefully in the near future. I would also be prepared to give that a go but think I'd probably opt for Fostamatinib in the first instance. 

Aw, mrsb, I'm sorry to read this.
Hopefully things will improve over the next 4 weeks.  Is it the trial drug that is making you nauseous?

Thank you Cindy, yes it is the trial drug causing the nausea. 

Sorry you have to go through that, mrsb.

Are you sure that was a cold, it didn't last long [thankfully].   Oh mrsb I'm so sorry - I really hope when you see your consultant again in a month your count will have gone up.  That nausea though has to be exhausting and a real pain.  It does sound like you have plans just in case - and that is good.   Sending you good thoughts!   Hugs!

Mel
It was definitely a common cold. 3-4 days is normal for me 

You are lucky to have colds that last 3-4 days!   Mine always went into a sinus infection - that is until I found out my D was very low and got that taken care of.  

I've only had infected sinuses once. It was awful and lasted about a fortnight. 6 weeks later I was diagnosed with ITP.

Hi LMan, OMG, so sorry to hear you have to deal with the US insurance system which can be a nightmare when you are on NPlate! I have been through everything you are describing. So stressful, all I can tell you is that I have ended up NOT having to pay for Nplate but suffered much anxiety getting those huge bills. And Yes, I run up about $300,000. per year but have paid nothing for Nplate.

I wonder if it might be better if you get your Nplate injections in a doctor's office.? I know thats the way it has worked for me. Is that an option? I didn't think it was approved to do home injections in the US. I have United Healthcare Medicare (which is different than your college insurance) and my Nplate Is paid for, but only because it is done at the cancer clinic. That would be billed under the "medical benefits". Mine is not covered under the pharmacy benefits as you mentioned. But yours might be different- your hematologist office would know. My doctors office has a financial counselor that helped me. What I've noticed is that my hema's office is pretty confident that they will get paid or they wouldn't give me the Nplate. That might be another advantage of having them order the Nplate rather than you, less personal responsibility. I don't want to make you feel more uncertain, its just that in-office injection is the only way I've seen it done in the US.

I was on Amgen First Step for many years. They paid all of my co-pays/ which were in my case, the same as "out of pocket max". "Out of pocket max" should mean exactly that. You shouldn't have to pay any more than $1800. total for the year and that amount will be paid by Amgen First Step.

I can't really answer your question about United Healthcare statement and what they mean by $0 paid. I think it means that you owe nothing? On my bills it says "amount paid to you" which is always $0. (because the money is going to the provider, not me). Not sure if thats what you are seeing on your bill. When I had Amgen First Step, Amgen paid my high deductible/max out of pocket which was $6000-7000 per year. I ran up that much in the first month because I need two vials per week. It was my max out of pocket, so after that was sorted out, I paid nothing for medical the rest of the year. But getting it sorted out was very stressful every year.

I hope this is helpful, its just my experience. And good luck!! hope it all gets paid for. I have had 3 different insurance providers since being on Nplate and United Healthcare has been the best. They are paying without any fuss or fight. All I know is that you'll be an INSURANCE EXPERT when you get through all this.

Count is 13 today.  
Seeing consultant again in 3 weeks. I would be surprised if I stay on the trial as I will not meet the criteria  of a "sustained  increase in Platelet Counts (Efficacy Outcome Measure). Time Frame: 24 weeks, platelet counts ≥50,000/μL on at least 8 out of the last 12 weeks of the 24-week treatment period without the use of rescue medication". Today is week 14 and  the only count I have had above 50 ( week 4) in the whole 14 weeks is when I was taking a rescue of 20mg/day of Pred. Apart from that the  highest  count I have achieved is 21 which isn't even 20  above baseline count. 

Discussed Fostamatinib with consultant last week.  I failed that trial too as couldn't maintain a count >49 but did manage >30 for most of it so would be happy to take it again as it has finally been licensed over here. Plus I never has a single side effect from it. 

Hi Poseymint! Thank you for your excellent response!

I wonder if it might be better if you get your Nplate injections in a doctor's office.? I know thats the way it has worked for me. Is that an option? I didn't think it was approved to do home injections in the US. I have United Healthcare Medicare (which is different than your college insurance) and my Nplate Is paid for, but only because it is done at the cancer clinic. That would be billed under the "medical benefits". Mine is not covered under the pharmacy benefits as you mentioned. But yours might be different- your hematologist office would know.

That was an option though, but during my first visit to the doctor, he said there was another student which is receiving it at home, although his provider was not my doctor and he had only heard of him at their hospital. During the month they were asking for pre-auth (which was never required), the doctor also wrote a letter to insurance stating that I have been self-injecting for 3 years and he believed I should do since coming into the office every week is a huge burden on me and the hospital. They definitely have sent that letter to the insurance since I got a copy of it, but I don't know if they have taken this into account or not. And yes, initially when I emailed and inquired about UnitelHealthcare from J2796, they told me this is approved for administration in the office. Since as you know, for every shipment optum calls medical benefits, I have a strong feeling that this is gonna be ok since otherwise, UHC would not give ok to send thousands of dollars worth of medicine to a student . The hospital nurse (after talking with optum and UHC) also told me it was ok to have it at home and she documented these on my chart which she told would be a legal document. And finally, what also made me confident was this:

Although not commonly self-administered at home in the United States, most of our patients can administer romiplostim at home after discussion with their insurer and training the patient. Home administration has been shown to be as effective as that by a healthcare provider ,  aob.amegroups.com/article/view/6335/html

I now believe chances are low that I get denied only because I administered at home, after all these conversations. I hope so!

I can't really answer your question about United Healthcare statement and what they mean by $0 paid. I think it means that you owe nothing? On my bills it says "amount paid to you" which is always $0. (because the money is going to the provider, not me). Not sure if thats what you are seeing on your bill. When I had Amgen First Step, Amgen paid my high deductible/max out of pocket which was $6000-7000 per year. I ran up that much in the first month because I need two vials per week. It was my max out of pocket, so after that was sorted out, I paid nothing for medical the rest of the year. But getting it sorted out was very stressful every year.

I also get two vials per week. Now that I checked the initial hospital bill (which was processed) more deeply, it seems the paid amount on the website bill is the amount that the insurance has paid, so we have paid = total benefits. In the case of hospital visit, the bill was $300 and the paid amount was like $100 and the rest, 300 - 100 = 200 was considered patient balance, which I had to pay out of my pocket, and that $200 was deducted from $1800 maximum out of pocket so now it is $1600.
What I just wanted to ensure is that as you said, what Amgen's first step is going to pay (on the very first bill, which would be more than my left balance of $1600) would now zero out my maximum of-pocket for the rest of the year, as you said. What I expect and want to ensure will happen is what Amgen is going to pay would zero out my out-of-pocket balance and I do not need to pay anything, rather than not decreasing my out-of-pocket balance so that I will have to pay the remaining $1600 out of my pocket, soon where the Amgen's $10000 annual limit was hit. I attached the bill maybe it helps to get the clarification.   drive.google.com/file/d/1PlZ-eKygqkHlm4jUSEXj_k4S1sN9Xvg4/view


And finally, yes. unfortunately, you will become an insurance expert going through all this   I hope it processes smoothly and my future work insurance is much better than this!

Thanks for your kind answer

Well shoot mrsb!   Is it possible you have the placebo - or is this a trial where everyone gets the real thing?
Makes sense to try Fostamatinib again.

Okay, what I think "Paid $0.00" means is that the charges are still "Under Review". No one has paid anything yet so zero paid. It doesn't mean they are not paying, its simply under review at this time. That is normal. Insurance companies don't just pay bills of $11,000. quickly. They have to haggle a bit and get the balance down.

My guess is that the insurance will agree to pay a percentage of the $11,000., not the whole amount. Then Optum will agree to that reduced amount and they will settle on it. Thats just my guess, your experience may be different. In my case, my doctors office/hospital group charges the insurance a whopping $18,000. for 2 vials/500mcg of Nplate! Its crazy, my insurance refuses that amount and agrees to pay $3,500. My doctors office/hospital group agrees to the lower amount and everyone is happy. The hospital group gets a small profit because they are likely paying only $2000. or less for the Nplate.

Another thing I'll mention in hopes to clarify: Amgen doesn't pay for Nplate, only what YOU owe for Nplate. They are only helping you, not UHC. So the way it looks to me is that Amgen will pay $1600. and that is all. They won't hit the $10,000. mark or come near it. Optum said your first copay would be $1700. so as you said, your out of pocket max would be met in the first shipment. I found the Amgen co-pay card to be pretty simple and reliable, there was never any problem with them paying my bills.

I hope I'm right! I would feel bad to have given you the wrong information. But thats the way it has worked for me. Health insurance is a complicated and weird game. I guess if you can talk to someone at UHC, you might ask them to explain their bill and confirm that "Out of Pocket" means the maximum you'll pay. You'll know more in a few months. Hopefully it goes smoothly as possible. Good luck! ~p

Mel
Every one is getting the real thing 

Aw, mrsb, that sucks!  I'm sorry you're going through that.  Fingers crossed that things start to improve soon.       

Is anything he actually says in the video incorrect? I'm not all that interested in internet personalities but pretending like the medical establishment has anything to contribute at this time apart from giving people anachronistic treatments like prednisolone is wrong.