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TOPIC: Questions for Those Experienced with ITP

Questions for Those Experienced with ITP 4 years 4 months ago #48394

  • Ann
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If Rituxan works it can cause a remission for about a year. So possibly a year with no treatment. If Nplate works it means a weekly injection for goodness knows how long but it can induce a remission eventually in some.

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Questions for Those Experienced with ITP 4 years 4 months ago #48404

  • Sandi
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I agree with Ann. If someone responds, they can get a remission for about a year (average). Some people get a good response, some get a minimal response, and some get no response. Rituxan can take 4 to 12 weeks after the first infusion to see a response. SO you basically end up waiting for 3 months to see if it works. If counts are low during that time, you will probably end up using something else while waiting.

Most of the people who fail Rituxan end up using N-Plate next. It can take time to get a stable count, but it usually will take someone out of the danger zone within a few weeks. You might end up having to treat with it for 1 to 3 years, but you would most likely have a stable count during that time if your doctor knows what he is doing.

I think that in Emily's case, the doctor gave up on N-Plate much too soon (just 2 or 3 weeks), took her off of it and yes, counts can plummet if you do that. You're already at the lowest point, so you have nothing to lose there.

I also feel that Rituxan is more toxic than N-Plate and the risks are greater. Those are my thoughts for what it's worth. Of course you will never know what would have happened if you'd chosen the other one first, so I'm sure it's a difficult decision.

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Questions for Those Experienced with ITP 4 years 4 months ago #48480

  • DelnStyle
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Hello All:

So I'm likely going to have to take another drug.

NPlate and Promacta basically are the same thing, from what I'm reading and what I'm told. It seems that Promacta would be the 'easier' route, since it's just an oral tablet.

Does anyone have experience with the both of these drugs? Since Promacta is a tablet that you put in your mouth, it seems that this would be quite easy. I guess, what would make me want to use NPlate over Promacta?

Thank you all.... This ride sucks.

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Questions for Those Experienced with ITP 4 years 4 months ago #48482

  • Ann
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Nplate and Promacta actually work in different ways. So medically speaking they aren't the same but both end up forcing the body to make more platelets. For me, I hate taking tablets, can't swallow them, so doing one injection a week, and I did it myself at home, was preferable. It also meant that I could totally forget about ITP six days in the week. Also for me the dietary restrictions for taking Promacta wouldn't really work. I know others wake up at 3 in the morning to take it but ugh.. and to not eat calcium foods around it is hard as I eat cheese all the time. So for me, there was no contest.

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Questions for Those Experienced with ITP 4 years 4 months ago #48485

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Also, did you check with your insurance and see which drug they cover better? Or do they cover both 100%. That would definitely help make a decision. Just a thought.

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Questions for Those Experienced with ITP 4 years 4 months ago #48492

  • TerriC14
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I am also looking at Promacta verses NPlate for my daughter. I am waiting to speak with the doctor but I am leaning towards NPlate right now. At this point in my research I am seeing more use of NPlate with young adults over Promacta (that could be just because I have not fully read yet). I am also concerned about dietary restrictions with our crazy lifestyle right now, I think it would involve getting up during the night to take it and I am afraid at some point we would forget, or if she tried to take it during waking hours it would be very inconsistent depending on the day which is not a great way to take medicine or would also lead to forgetting. But I also need to check the insurance and I want to hear the feedback from the doctors.

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Questions for Those Experienced with ITP 4 years 4 months ago #48522

  • DelnStyle
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So, I'm beginning to think that NPlate might be my route as a next step.

Here's my concern and for those of you that have taken NPlate, perhaps you can weigh in on this.

From what I read, NPlate does seem promising enough to at least obtain platelet count increases. My concern is that this is a drug that once you get on, you are 'stuck' on so to speak because it's artificially raising your production of platelets. But, are you not 'stuck' basically taking this for who knows? Months? Years? Because if your body relies on this drug to keep the production up, then you never really get 'normalized' right?

I guess my question is, How do you 'get off' this drug once you start it?

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Questions for Those Experienced with ITP 4 years 4 months ago #48527

  • Sandi
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Deln:

N-Plate is a maintenance drug, yes. People have successfully been able to get off of it after a few months or years because N=Plate can cause remissions.

With the knowledge that the thrombocytopenia in ITP is caused in part by impaired platelet production, TPO-R agonists have recently been used successfully to treat ITP.4,5 Response rates of 70% or higher have been achieved, but only while patients continue on treatment is the effect on their platelets maintained.4,5 As platelet response is driven by TPO-R agonist stimulation of thrombopoiesis, it is not unexpected that drug-induced platelet production thus ceases when the drug is stopped. In this context, the first demonstration of improved Treg activity with TPO-R agonists by Bao and colleagues is surprising and highly significant.1 However, this small cross-sectional study requires confirmation by a much larger longitudinal study, in particular a study which also shows antigen-specific increase in Treg activity (as immunosuppression by Tregs is antigen-dependent2). Nevertheless, the finding1 of Bao et al is still interesting and may explain the sustained platelet response experienced by 7% of ITP patients treated with TPO-R agonists in clinical trials. The unexpected remissions were initially attributed to spontaneous remission which can occur occasionally in chronic ITP, although all these patients had failed several ITP treatments before receiving TPO-R agonist therapy.


It is tempting to speculate that TPO-R agonists may have immune-modulating activity and thus induce sustained remission in ITP patients if given to appropriate patients for an adequate duration. However, immune cells do not have TPO-Rs. If this activity exists, TPO-R agonists must exert this effect via a mechanism independent of TPO-R. Tregs and other less well-studied suppressive T cells2 are probably the key to this activity. ITP occurs because APCs, macrophages, stimulatory Th cells, and B cells (which perpetuate the disease) escape the immune surveillance by Tregs. Tregs exert immune control by modifying the functions and numbers of these cells, and consequently return the immune system to homeostasis and health. For example, Tregs can induce apoptosis of the effector cells or can inhibit their activation and functions.2 These Treg actions are mediated by soluble factors (such as transforming growth factor-β [TGF-β], interleukin-10, perforins, etc) and cell-associated molecules (such as cytotoxic T lymphocyte antigen 4, lymphocyte activation gene-3, LFA-1/CD11a, CD18, CD39, etc).2,3 However, how TPO-R agonists improve Treg activity is still unknown. It may be via a sustained increase in antigen load that induces tolerance or via an increase in anti-inflammatory cytokines such as TGF-β as both antigen and TGF-β can induce Tregs.3 There is no good evidence to support either hypothesis and hence further studies are clearly needed.



www.bloodjournal.org/content/116/22/4388.full?sid=6289f8c7-0a84-4a8d-93cb-7f281787cd36&sso-checked=true


Also, you can stop using it if you decide to go with something else. I think you need to be prepared that you might be on it for a few years, but it certainly doesn't mean forever. Some people have been on it for 8+ years and are doing well.

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Questions for Those Experienced with ITP 4 years 4 months ago #48580

  • DelnStyle
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Hello all:

I am in a bind, and don't know what to do.

We are tenatatively going to start Rituxin on Monday 5/18, depending on how my symptoms are and counts, etc...

I'm on 40 mg daily of prednisone. My Dr. suggested that for the next 4 days, I take 40 mg Dexamethasone tablets (equivalent to 100 mg prednisone).

Has this been heard of before? Lets just assume that the Dex does work, temporarily? Will I have to taper off of the Dexamethasone then? I'm very confused at all this?

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Questions for Those Experienced with ITP 4 years 4 months ago #48581

  • Sandi
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Yes, there have been studies about the Rituxan/Dex combo that state that the chance of remission is higher and longer with both drugs.

No, you do not have to taper the Dex; it's just for four days. I'd imagine after that you'll go back on your normal Prednisone dose.

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Questions for Those Experienced with ITP 4 years 4 months ago #48584

  • DelnStyle
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Hi Sandi,

Thank you for your response. You are so kmowlegable.

So after 4 days of Dex, I'd likely be out back on 40 Or 30 mg prednisone and continue tapering off prednisone?

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Questions for Those Experienced with ITP 4 years 4 months ago #48585

  • Sandi
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DelnStyle wrote: So after 4 days of Dex, I'd likely be out back on 40 Or 30 mg prednisone and continue tapering off prednisone?


I would think so, at least, that is how it should be done. Dex can kick you in the butt...it's a very strong drug.

www.bloodjournal.org/content/122/21/2310?sso-checked=true

www.bloodjournal.org/content/109/4/1401

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Questions for Those Experienced with ITP 4 years 4 months ago #48592

  • tgurin12
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I actually am just finishing off that exact treatment protocol now. I did the the Dex Pulse and started Rituxan on the last day. I will have my last Rituxan treatment on Monday. The Dex temporarily brought up my numbers but they fell again. Right now my numbers were-

10,000 start
70,000 First Rituxan, last day of Dex
40,000 Second Rituxan
54,000 Third Rituxan

My bruises are healing fast this week so I'm hoping for good numbers Monday

I was also on N-Plate a couple of years ago and the Rituxan actually stablized me and got me off of it

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Questions for Those Experienced with ITP 4 years 4 months ago #48607

  • DelnStyle
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TGurin,

That happened good go hear. I'm wondering what's going to happen with the tapering of this Dex / prednisone? I was on 40 mg prednisone, then have these 4 days of Dex. Now do I go to 30 mg on Monday with Rituximab do you think?

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Questions for Those Experienced with ITP 4 years 4 months ago #48611

  • tgurin12
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Like Sandi I would think that would be the ultimate goal, but every doc is different. I have a lot of side effects on the steroids so my hemo tries to keep me off them as much as possible since long term treatment with pred is not really an option for me.

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Questions for Those Experienced with ITP 4 years 4 months ago #48616

  • DelnStyle
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How have you done on Rituximab in general? What's your experience been?

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Questions for Those Experienced with ITP 4 years 4 months ago #48638

  • tgurin12
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I was suffering from fatigue before and the Rituxan just increased it. The day of the infusion and the two days afterwards I feel really tired. My appetite is increased. (strange since I'm not on steroids but I read on the "official" Rituximab site this can be a side effect). Some strange muscle pains.


As for platelets, I posted my numbers above so far for this time. I'll update tomorrow on my last dose where the number stands.


Two years ago my platelets went up to over 400,000 then stablized around 100,000 and pretty much for two years stayed between 70,000 and 100,000 until three weeks ago.

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Questions for Those Experienced with ITP 4 years 4 months ago #48654

  • tgurin12
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Today was 101K

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Questions for Those Experienced with ITP 4 years 4 months ago #48655

  • DelnStyle
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Thanks for your information TGurin.

So here's my recent update.

The 4 day Decadron pulse has 'temporarily' worked, as my platelets are 37,000 which has been the highest they have been in months. That is good news. However, I'm well aware that I can't sustain a high number like this, or it's at least unlikely.

Right now, the plan is to continue tapering down the Prednisone (I'm on 30 mg now for another 7 days). Then, see what happens with the platelets. Perhaps, I'll do more Decadron in 3 weeks or so, and get myself off the prednisone completely.

Then, there was some drug that was referenced if needed. It's called "ABATECEPT"

Has anyone ever heard of this or tried it?

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Questions for Those Experienced with ITP 4 years 4 months ago #48657

  • Sandi
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Abatecept is Orencia....a biologic used for certain autoimmune disorders. I've never heard of it being used for ITP. So far, I can't find any internet info.

Are you scheduled for Rituxan?

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Questions for Those Experienced with ITP 4 years 4 months ago #48664

  • DelnStyle
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Hi Sandi,

I'm not currently scheduled for Rituximab at the moment. We are going go get me off the prednisone, tapering me down over the next couple weeks. If my platelets go low again, they will probably give me another 4 day Decadron burst.

Then, we will look into potentially this Abatecept, which I was informed might be a great alternative without using NPlate, Rituximab, and stuff.


Might not be there at fish point though, maybe the Decadron and IVIG can reset my system over the coming weeks.

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Questions for Those Experienced with ITP 4 years 4 months ago #48666

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DelnStyle wrote:
Then, we will look into potentially this Abatecept, which I was informed might be a great alternative without using NPlate, Rituximab, and stuff.


When I google "abatecept thrombocytopenia" all I see is some reports of thombocytopenia being reported as a side effect of have the drug/treatment. Not a lot of reports, but it's odd that's all that comes up. I'm mystified as to why it would be a great alternative to treatments that have been proven to work for many, though not all, ITPers. If you choose to go that route, hopefully you'll share the information your doctor is giving you that supports its use for ITP. I'd be interested.

Your treatment choices so far have been pretty non-standard, but that doesn't mean they're wrong. You and your doctor are closer to the situation than any of us here.

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Questions for Those Experienced with ITP 4 years 4 months ago #48667

  • Sandi
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Orencia isn't much different than Rituxan. It's a biologic with very similar side effects.

www.orencia.bmscustomerconnect.com/

I'm with Tamar. It all seems a bit odd.

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Questions for Those Experienced with ITP 4 years 4 months ago #48672

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Orencia seems to block T cell action. Interesting to see if it works.

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Questions for Those Experienced with ITP 4 years 3 months ago #48741

  • DelnStyle
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Good evening everyone,

I hope you are all doing well. Just wanted to provide an update and had a quick question.

So far I'm not symptomatic after my 4 day Decadron and IVIG infusion. Monday's counts were 37,000. I am going to get checked Tuesday morning. I suspect I am not under 7,000 since I do not have my typical symptoms I wrote about earlier. No blood blisters, or petechaie.

I'm very curious though to see how long this Decadron pulse sustains my numbers. I'm also still tapering down prednisone. I'm at 30 mg daily, and go down to 20 mg on Monday.

I did have two questions about prednisone for you:

1. With regards to tapering down once at 10 mg per day, do you typically go 10 mg to 0 mg or have you taken 5 mg increment steps?

2. Now, my other prednisone issue seems to be that I notice I can tilt my head back as much. So, like that hump thing I think formed. How long has it taken you all to "return to normal" after eliminating the prednisone? Both physically and mentally?

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Questions for Those Experienced with ITP 4 years 3 months ago #48742

  • Sandi
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After 10 mg's, you should go to 5. The withdrawal will be easier. Getting below 10 is the hardest part. Some people go down to 2.5 before stopping and some go down by 1 mg at a time.

It would be odd to get the hump that quickly. Not everyone gets it and it usually takes a few months. Have you gained much weight? As for getting back to normal physically, that depends on how high the dose was and how long a person was on Prednisone. It can take a few weeks or months, depending. The same goes for the emotional aspect.

Good luck with counts on Tuesday.

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Questions for Those Experienced with ITP 4 years 3 months ago #48743

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Thanks Sandi. I have gained about ten pounds already. Mostly in stomach area. I don't think many would notice a hump, but my neck has decreased movement now.

I'm a bit confused about the problem with the prednisone taper. Meaning, I read its a potential problem with adrenal insufficiency. So, my interpretation of this is that IF I'm suddenly in some "fight or flight" tense situation and I've tapered too quickly where I lack active production naturally, then that's where I'd run into some trouble.

But aside from some immensely stressful event or something that would induce some massive panic, then what does it really matter if I go from 30 mg, 20 mg, 10 mg 0 mg?

(Aside from that it may or may not affect my platelets)

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Questions for Those Experienced with ITP 4 years 3 months ago #48745

  • mrsb04
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Prednisolone should be tapered slowly to avoid adrenal crisis, coming down from 10mg to 5mg in one go is too fast. Maybe down to 7.5 mg then reduce gradually from that

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Questions for Those Experienced with ITP 4 years 3 months ago #48746

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I tapered from 10 to 5 and then alternate days 5 and 0 for two more weeks before stopping. It's more gentle on the body and the side effects of tapering.. muscle and joint pains were less that way. During those two extra weeks the fat face and so on went so for me it was worthwhile as it didn't prolong the misery any longer while getting me off more easily.

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Questions for Those Experienced with ITP 4 years 3 months ago #48747

  • Sandi
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It can make a difference in how you feel. That can make a big difference if you are trying to keep up with a busy life. When I tapered the first two times from Prednisone, I did go from 10 to 5 because my doctor told me to. I actually did okay as I recall, but since then have realized that it's not ideal for the body and really, what's the rush? Those few mg's probably won't cause negative side effects but can make the transition easier.

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