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chronic but "safe" ITP for a year after COVID vax - I have questions 3 months 6 days ago #73382

  • Daryl
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Hi all - I'm new here although I've looked through a lot of the resources before. 43M/USA

So my situation is that my counts started dropping after a second COVID shot. I had some other unrelated (I think) symptoms too - chest pain, mainly - and even went to the ER for that. They gave me something for possible heart inflammation just to be safe, but made no mention of any other problems.

Fast forward one year, I get a routine CBC and the urgent care doc casually notes that my platelets have been low in the last few tests and I should see a hematologist. I then looked back at all my blood tests from various places and put them in chronological order, and I saw that the decrease started after that shot and had been fluctuating between 40s and 80s. My count at that ER visit a year earlier had been 70, yet no doctor there had brought it up to me.

So this means by the time I see this hematologist it has already been a year, so I'm now "chronic" with no treatments. I fortunately have never dropped into single digits - lowest so far has been 42. Guidelines say to not even bother treating above 30, but she offered to push for some things. First it was IVIG, but when I read about that it seemed like an emergency bandaid rather than something potentially curative. Then she offered rituxan, which has better long-term remission - but I'm afraid of wiping out my immune system. Finally we settled on a round of high-dose dexamethasone. That was four months ago, and my counts at last check are 150 (yay!) so I apparently responded well.

Sorry for typing so much, I have a lot in my brain right now. Anyway onto my questions:

I have been scouring the internet for any hint at the possibility that the steroid alone might put me in a long-term or even permanent remission. But what I see mostly is that the effect tends to last a few months. What has your experience been with the steroid approach?

My other question is looking forward, assuming I need some kind of treatment eventually, how the heck does anyone afford it? Promacta and Doptelet are $10,000 a pop, rituxan is expensive too, so is IVIG - not to mention any scenario involving a hospital bill. I'm currently on medicaid and that has been a godsend, but I can't stay on it forever. I live in a very expensive city and I'm trying to move, find a job, etc., but when I look at marketplace health plans, I see "specialty drugs" not really covered, even in gold-tier. Like they'll say "50% coinsurance after deductible" which means I'm on the hook for half the cost. I'd definitely hit my OOP limit, which is usually several thousand dollars. So when you divide that monthly, it's like a premium on top of the premium. Comes out to $1,000+ per month, which feels crazy expensive to me, even once I start working again.

I know the drug makers offer some assistance programs but I don't really get how that works. Is that how most people manage it? I'm trying to find a job with good health benefits, like I heard about this thing through CVS that some employers offer which reduces drug costs. But so far no luck.

I know my situation could be worse, but I'm a planner and I don't want to wait until I get blindsided by costs and crashes. I'm still processing the fact that I have a rare disease in the first place and I just want to move forward with my life.

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chronic but "safe" ITP for a year after COVID vax - I have questions 3 months 6 days ago #73383

  • Dave
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  • Diagnosed October 18, 2011 Bloomington, IL
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I can respond to the steroid part, but my case is not typical.  I got diagnosed 12 years ago with a count of 1 and lots of bruises and petechia, but no outward bleeding.  I spent 5 days in the hospital with counts under 10.  I had 2 rounds of IVIG, an IV steroid, and Prednisone.  On discharge my count was 42 with a plan to continue Prednisone and pray.  A week later my count was over 400.  It steadily fell as I tapered the Prednisone and when it hit 150 I was expecting the remission to end, but my next count was higher and every count since has been normal, even after the Prednisone was completely removed.  I get tested once per year and am usually in the 200s, always in the normal range.  Steroids don't cause a lasting remission for most people, but in some cases they do, and since they are the least invasive and cheapest treatment, they are always worth a try.  I don't know if mine would have worked without the IVIG and certainly think the prayers helped, but I'm incredibly thankful.  Good luck with continued good counts.  Hopefully your remission holds.  
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chronic but "safe" ITP for a year after COVID vax - I have questions 3 months 6 days ago #73384

  • CindyL
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Daryl,
We are all different in our cases and how we respond to treatments.  My story is I was diagnosed in 2004 and did IVIG every week for the first year which didn't help.  My hema doctor suggested a splenectomy, but I wasn't ready for that.  I was also on Prednisone, at different doses, the whole time.  I finally did the splenectomy in 2006 hoping to get away from the Pred.  The surgery worked for about a month, then I was right back to the beginning.
I did 4 weeks of Rituxan in 2011 and it put me into remission.  I don't consider myself immune compromised because of that, but because of being spleenless.  I live my life normally but I do try to stay away from people who are sick.
I have had 4/5 shots for Covid and due for a booster on December 1.  None of them affected my counts. 
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chronic but "safe" ITP for a year after COVID vax - I have questions 3 months 6 days ago #73385

  • Daryl
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Thanks Dave. Yeah I have this feeling that if I had gotten treatment a year ago it possibly could have avoided turning "chronic." But apparently the protocol is not to treat above 30k. I wish I had just given myself some corticosteroids at the time.

That's awesome that you've been able to stay in remission. I think what bothers me the most is not the disease itself but the difficulty in affording potential treatments. Like I'd be fine going on a TPO-RA if necessary, but none of the health plans I've looked at in PA really cover "specialty" drugs without the patient first spending thousands of dollars to hit the OOP max. It's total bull$@^% and has sent me into quite a spiral. Anyway thanks for replying, good luck to you too.

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chronic but "safe" ITP for a year after COVID vax - I have questions 3 months 6 days ago #73386

  • Daryl
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Hi Cindy, sounds like you've been through a lot! Glad you are in remission.

My hemo offered ritux to me before the steroid. I wonder if I should just go ahead and do it and maybe it will knock out the dysfunction, at least for a while. I was turned off by the potential side effects but I guess a lot of people do it and are fine.

I know thrombocytopenia from the vaccines is very rare. There were some cases from the viral vector formulations but virtually none from mRNA or Novavax, so it's really weird that this happened to me, and very frustrating and hard to talk about with other people. I'm having a hard time processing it tbh. I want to just "fix" it and move on but apparently that's not how it works with this disease, and like I said, the costs for treatment are just insane. I dunno what I'm going to do. The predatory pricing on specialty drugs is terrible.

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chronic but "safe" ITP for a year after COVID vax - I have questions 3 months 5 days ago #73390

  • CindyL
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Hey, Daryl.
I read your comment about our Canadian health care system.  Yeah, it's not too bad.  But even each Provincial health care is different.  The idiot we have as Premier here in NB is ruining ours.  We're losing nurses and wait times are ridiculous for tests.  My hema doctor had to get permission to use the Rituxan on 3 of us otherwise I wouldn't have been able to afford it. I'm not sorry I did it.
If you decide to go that route, I hope it works!  Keep us posted on how you're doing.
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chronic but "safe" ITP for a year after COVID vax - I have questions 2 months 3 weeks ago #73398

  • ImPatient
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Hi Daryl,
The protocol not to treat above 30 is if you don't experience any significant symptoms. If you do have symptoms you might need treatment. 
I'm sorry you're having problems from the Covid shot. These things were known early but censored. 
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chronic but "safe" ITP for a year after COVID vax - I have questions 2 months 3 weeks ago #73400

  • poseymint
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Hi Daryl, Sounds like you are in remission with counts of 150- thats great!  I have heard of people going into remission from steroids, yes it can be temporary or permanent. Now you will have to watch your labs and medical notes more closely, as you have mentioned, doctors don’t tell us everything. It’s really up to the patient to figure out ITP and advocate for treatments or refuse treatments. Some of the treatments are harsh and dangerous. When I was first diagnosed 14 yrs ago, there was a warning on the Mayo Clinic website that said “caution the treatments for ITP can be worse than the disease”. People can live with low platelets. It’s important to look at symptoms, not just platelet counts. I agree that you shouldn’t have IViG as a first treatment. I’ve never had it. It’s a blood product that I consider one of the Big guns. Better to start as you did with steroids. I have refused splenectomy because it doesn’t always work (50%) or is temporary plus it’s a healthy spleen that is doing its job.

I have been on Promacta, Rituxin, and am currently on Nplate. Some insurances will pay for Rituxin because it’s an infusion in a medical office. My medical organization, St Joseph paid for Rituxin as I was low income.

The hematologists office signed me up for the patient assistant programs, thats how it works. I go to a cancer center so they are very good at getting expensive drugs paid for. I was on Promacta’s patient assistance program for several years. Promacta was owned then by GlaxoSmithKline and they gave me Promacta for free- they even paid FedEx shipping every month. Promacta was sold to another drug company so don’t know how that works now, likely is a similar program.

Amgen owns Nplate and has a patient assistance program called First Step. Amgen will pay 100% of your copay/coinsurance. It’s quite amazing, Amgen gives the hematology office a credit card and when you have a copay (mine were $6,000) they just swipe the credit card and its instantly paid. I think the patients income has to be below a certain amount, like $70,000. It doesn’t work with Medicaid/Medicare can’t be a government insurance, it has to be a private employer type insurance. I was on that program for many years. Now I have Medicare and am not eligible, but still my Nplate is getting paid for 100%. It’s because it is an injection given in a doctor’s office so is billed differently than a prescription drug. In California I know Medicaid (mediCal) pays for everything because my son has that insurance but I don’t know about other states.

So I wanted to answer your questions but really hoping that your remission is permanent- 150 is a great count! Also yes, vaccines do sometimes give people ITP, several people on the forum over the years have had ITP from vaccines. Sometimes it just goes away. Children can get ITP from colds and flu. It often goes away on its own without treatment so doctors usually just monitor it. 
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chronic but "safe" ITP for a year after COVID vax - I have questions 2 months 3 weeks ago #73401

  • ImPatient
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Poseymint, that is useful to know for me too, I keep wanting to move back to California but have been too afraid the last years, because I didn't know how to keep covering my medical expenses there.

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chronic but "safe" ITP for a year after COVID vax - I have questions 2 months 3 weeks ago #73402

  • poseymint
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California is an expensive place to live but is excellent for social services. My son (age 31) got signed up for Partnership Health Plan through a community health clinic. It’s one of the MediCal plans, I believe it’s free if you qualify. Hes always been healthy so didn’t need to use it for many years but this year he has had a 9 day hospital stay and some very expensive procedures and drugs. He hasn’t received one bill, only confirmation that everything has been paid at 100%. Omg so thankful for that plan!

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chronic but "safe" ITP for a year after COVID vax - I have questions 2 months 3 weeks ago #73403

  • ImPatient
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Poseymint- Wow that's amazing! I hope your son is doing better? I never really figured these things out when I was there (2003-2015), but that was before I had ITP. I was almost never ill, so I rarely needed insurance. I had to pay pretty much everything dental on my own (seemed cheaper that way but still had to borrow money). Had no insurance 7 years, then Healthy Way LA and Medical later I think... Broken arm, one of those metal thing surgeries, had to pay only 11$, that was good... 
If I go back, how can I make sure I find the right plans and don't need to wait for meds in an emergency? Where do you know these things from, are there some good websites or doctors you can recommend? 
Do you think it's possible to get enough money if you can't work for example? I'm always terrified I'd end up in the streets if something happened. (I have US citizenship, but am from Europe, would prefer to live and maybe even retire in California.)

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chronic but "safe" ITP for a year after COVID vax - I have questions 2 months 2 weeks ago #73411

  • Luvmycat
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HI Daryl...I wish you the best of luck in resolving your situation. I am very sorry to hear everything you have to deal with. I get it as I too am a planner. 
I just wanted to chime in here and tell about my husband's ITP and the opposite effect vaccines have had on him. (He got diagnosed in 2000 via a routine physical. He has a work history of benzene exposure, so most likely it's industrial disease.)  
Normally his platelets are in the 20K's. He does not treat unless he has to have some type of procedure no matter how minor. The IvIg and dexamethasone are the only things that work for him and his platelets fall off quickly after that treatment so it's just a temporary fix. He does bruise easily but really doesn't have other symptoms of ITP.  Oh, and he has a woodshop. Go figure.
Now the interesting part....I went back 10 years and his platelets have ranged from 14K to 38K and all the other counts are in the 20K's.  In November 2021 he had the Covid vaccine 10 days prior to getting bloodwork and his platelets were 96K!  Just this November, he had the RSV vaccine 3 weeks prior to getting bloodwork and his platelets were 139K!  He is having a colonoscopy this week so we intentionally got the Covid shot last Monday hoping his platelets will be up and he can bypass the IvIg, etc. He goes for bloodwork in the morning so it will be interesting to see what his platelets will be.
Our philosophy is this:  sometimes the cure is worse than the disease. We know his platelets are low and have been for 20+ years but he is, otherwise, asymptomatic and healthy, so why treat?  
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chronic but "safe" ITP for a year after COVID vax - I have questions 2 months 2 weeks ago #73415

  • MelA
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Interesting Luvmycat - I'm happy for your husband!   
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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chronic but "safe" ITP for a year after COVID vax - I have questions 2 months 2 weeks ago #73424

  • Daryl
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PoseyMint, thanks for the info about your experiences paying for treatments. The current Promacta website does say there are assistance programs, but they cap it at $15k, and my understanding is that the drug costs over 10k/month, so that's only a month and a half of coverage? It's confusing. Currently I have Medicaid which has been awesome, have not seen a single bill. But I'm trying to get a job which means back on commercial insurance, and who knows what they'll cover. I think I might have to just budget hitting the out-of-pocket max every year for whatever plan I get.

It's good that there are multiple treatment paths these days, so I'm not too worried - as long as I have coverage and don't go bankrupt. I don't know my current platelet count, the results of my last test have not come in yet. Afraid to get my hopes up with the steroid (just about at the six month mark now). I mean, if I could just take a short course of steroids every six months I'd be fine with that, but I suspect the effectiveness of that would wear off over time.


Luvmycat, that is interesting that your husband has the opposite effect from the vaccine. Immune systems are weird, the more I learn about it the more I realize how little we know. A lot of published research is more about measuring observations than it is about understanding how anything works. And a lot of clinical medicine seems to just be trial and error.

I think you have the right philosophy. I'd like to avoid treatments as much as possible, unless the doctor thought there might be a curative remission. Then I'd jump on it. But that doesn't seem to be on the menu. Maybe some day in the future medicine will find a way. For now, if the treatment options are to destroy my immune system, go on drugs with a lot of side effects, or remove an organ from my body... I'll just take the wait-and-see approach. 

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chronic but "safe" ITP for a year after COVID vax - I have questions 2 months 1 week ago #73426

  • Luvmycat
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Daryl...how are insurance companies handling pre-existing conditions these days? I've had my current insur for a long time so I'm out of the loop on that one.  My husband had blood work Monday and his platelets had gone down to 84K. We figured it was too good to be true.  So, his procedures had to be canceled for today and tomorrow and rescheduled for January along with the IVIG and dexamethasone. Bummer as he wanted to get it over with and then our deductible starts over in Jan as well.  I agree with your wait-and-see approach, especially a spleen removal! I have also read that this is a failure in many patients as the liver takes over destroying the platelets. I hope that your immune system "straightens out" and this resolves itself. Keep us posted and we'll be glad to answer any questions you may have.

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chronic but "safe" ITP for a year after COVID vax - I have questions 2 months 1 week ago #73428

  • MariLinTx
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  • Ret. RN/attorney, wife/mom/grandma ,Dx. 2/1/22. Fear has worn off as Doptelet is working. Now just trying to be an active family member and deal with,ITP, CAD, labile BP, CKD, back pain & mobility issues; neuropathy; migraines, and more. : (
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While my husband was still employed our BC/BS covered almost everything with very little out of pocket after our annual deductible was met; what wasn’t covered, since we had private pay insurance -NO GOVERNMENT PLAN-the manufacturer picked up whatever was remaining. as long as you private insurance the manufacturers seem helpful. 
Now I’m on Medicare and a private supplemental plan G as well as plan D for prescriptions. I haven’t yet had to try to fill my Doptelet prescription but from what I understand I’ll end up in their ‘donut hole’ for catastrophic  illness meds and, like you, I’m thinking it will be ridiculously expensive. 
  If anyone out there has Medicare plus supplement plans and can tell me how this works I’d greatly appreciate it. 

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chronic but "safe" ITP for a year after COVID vax - I have questions 2 months 1 week ago #73431

  • midwest6708
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MariLinTx, I have a Medicare Advantage PPO plan.  I've been taking NPlate since 2014, with an attempt at Rituxan in 2018.  My plan has picked up every cent of these costs.  Nplate is billed as an in-office treatment, not as a prescription drug under part D, and thus is reimbursed completely that way.

At one point, I was considering a switch from NPlate to Promacta, which would be billed to Part D instead of G.  My co-pay would have amounted to $80 a month.  I ultimately decided the switch wouldn't necessarily be worth it.
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chronic but "safe" ITP for a year after COVID vax - I have questions 2 months 1 week ago #73432

  • MariLinTx
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  • Ret. RN/attorney, wife/mom/grandma ,Dx. 2/1/22. Fear has worn off as Doptelet is working. Now just trying to be an active family member and deal with,ITP, CAD, labile BP, CKD, back pain & mobility issues; neuropathy; migraines, and more. : (
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Is Nplate an oral med? I’m doing so well on Doptelet I’d hate to change but I am considering options so thank you very much! 

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chronic but "safe" ITP for a year after COVID vax - I have questions 2 months 1 week ago #73433

  • midwest6708
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NPlate may have been the first TPO-RA drug marketed in the US, I don't remember exactly.  It's a weekly subcutaneous injection that must be done in a doctor's office or infusion center.  For me, that's little trouble, because my doctor is within 3 miles of my home.  I'm not bound to a set appointment time.  I go every Tuesday in the 10-11:00 hour, and I love the nurses who've been caring for me ever since my diagnosis in 2008.  The schedule works fine for me, but I'm well aware there are many who prefer an oral med to take at home.  The worst part of the whole routine is the weekly CBC.  I sure could do without that, but my counts are too unstable to skip it.

There may come a time when getting out of the house will be hard, and I'll have find an at-home drug to take.  For now, though, I'm very happy that NPlate gives me no side effects, has no dietary restrictions, and costs me nothing out of pocket.  Will deal with a change when/if it needs to happen.

Would you mind telling me a little about your experience with Doptelet?  It wasn't available when I began treatment.

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chronic but "safe" ITP for a year after COVID vax - I have questions 2 months 1 week ago #73444

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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Midwest 
Aren't you allowed to inject yourself?

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chronic but "safe" ITP for a year after COVID vax - I have questions 2 months 1 week ago #73445

  • midwest6708
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Mrsb, Amgen's patient care information page says that a doctor or health care professional has to recommend self-administration "for specific patients".  I assume those would be mainly rural residents with limited access to traditional health care settings or services.  I doubt that many people who live in large metro areas like me would be given the choice of self-injection unless that requirement would prove to be a true hardship. 

In my own case, the tiny dose of just 5 or 10 mcgs per syringe that I need might be too miniscule for me to prepare on my own.

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chronic but "safe" ITP for a year after COVID vax - I have questions 2 months 1 week ago #73447

  • mrsb04
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Midwest
In my own case, the tiny dose of just 5 or 10 mcgs per syringe that I need might be too miniscule for me to prepare on my own.
Not if you were trained properly.  Sounds like a money making exercise by Amgen 

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chronic but "safe" ITP for a year after COVID vax - I have questions 2 months 5 days ago #73448

  • MelA
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Could be the insurance company too mrsb.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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chronic but "safe" ITP for a year after COVID vax - I have questions 2 months 5 days ago #73449

  • mrsb04
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Mel you are correct of course. I will never get used to the USA way of doing health care. 

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chronic but "safe" ITP for a year after COVID vax - I have questions 2 months 5 days ago #73450

  • midwest6708
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While I'm categorically opposed to the marketing methods of the big pharmaceutical companies in the US, I can't think of any way Amgen would profit from mandating a location where the drug gets administered.  They even provide a video tutorial for patients who need to self-inject.  Would they do that if they were opposed to it?  If anyone is to blame for the requirement,  it would probably be physicians who own infusion centers that profit from the fees involved with the drug's administration. 

One fun fact I've learned this year is that companies that package drugs in vials of one or two amounts where the unused portion can't be tapped into for subsequent doses - like the 250 and 500 mcg vials of NPlate - can no longer receive compensation from patients or insurers for the discarded portion.  They've been rewarded for this intentional waste for far too long.

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chronic but "safe" ITP for a year after COVID vax - I have questions 2 months 5 days ago #73451

  • MelA
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mrsb I know someone who was to self-inject a drug for osteoporosis - went to doctor to get instructed on how and then found out insurance wouldn't allow that and would have to go in for the procedure all the time.  The person even has an RN family member who offered to inject, nope can't do.   Self-injecting would have been minimal cost, having to go in would have been very expensive so went back on the pills.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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chronic but "safe" ITP for a year after COVID vax - I have questions 2 months 5 days ago #73452

  • MelA
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 Janet, why in the heck would a company be compensated for an unused portion of an injectable drug??  Good heavens - patients don't get compensated for pills that are past the expiration date and can't be taken.  Oh my!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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chronic but "safe" ITP for a year after COVID vax - I have questions 2 months 5 days ago #73453

  • Margaret
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Even the expiry date seems like a marketing thing. My GP told me dry medications do not lose their effectiveness with time. Different with wet stuff. I subsequently Google Scholared it and concluded he was right - no research has found deterioration in dry medications if properly stored
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chronic but "safe" ITP for a year after COVID vax - I have questions 2 months 5 days ago #73454

  • midwest6708
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Mel, I can't explain it.  I only know that for most of my treatment time on NPlate, my insurance has been charged for an entire vial for each injection, even though I hadn't received all of it.  That's no longer the case.  The drug company now has to absorb the difference,  which strongly suggests to me how wildly overpriced the stuff must be that they can still glean a profit from what is actually being used.

I don't get why an insurer would balk at self-injection.  It would save them money, wouldn't it?  The pay my MD's practice for giving shots, but they surely wouldn't pay me!

Margaret, thanks for that information.  Good to know!
The following user(s) said Thank You: Margaret

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