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TOPIC: Questions for Those Experienced with ITP

Questions for Those Experienced with ITP 4 years 2 days ago #49172

  • tamar
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DelnStyle wrote: Hi Ann,


The Doctor I see (he is actually listed through the PDSA link when you 'search' for Hemos.) I primarily began going to him for my CVID, but he is also versed with ITP as well.


DeIn, the link on the PDSA site goes to the directory for the American Society of Hematology (ASH). Very few (percentage-wise) of the doctors listed in that directory have experience with ITP.

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Questions for Those Experienced with ITP 3 years 11 months ago #49235

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6/19/2015:

Good afternoon everyone.

So it's Friday. It's been 13 days since I last took Decadron (40 mg). This is bittersweet for me right now. I'm actually starting to feel more 'normal' again. Meaning, I don't really feel the steroid side effects or whatever. I'm thinking a lot more clearly, and I don't have such a depressed attitude.

BUT, and this is the big caveat... It was about this time (16 day mark) with the first Decadron pulse, that my platelets went back down to 2,000.

Have any of you seen the Matrix Trilogy? You know what it's like? I believe it's the 3rd movie. Keanu Reeves and the girl are flying through some massive dark cloud storm or whatever it is. Then, for some type of escape from the enemy, they pull the ship up and go 'above' the dark clouds and all the junk they were in. Then, for perhaps 10 seconds, they see the sunlight and feel that warmth.

That's kind of how I feel (or have felt) for a couple days now. I've been 'above the clouds' so to speak because I haven't been on any treatment, I haven't had any symptoms. But now... I very well may be headed back down.

I will be nervous this weekend, checking to see if there's blood blisters in my mouth or what not.

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Questions for Those Experienced with ITP 3 years 11 months ago #49236

  • Sandi
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Deln:

I know I sound like a broken record, but it is purely out of concern for you....why are you going with a treatment that you feel sure is going to fail? Why go through the side effects and the time worrying? Do you have that much hope for the end result from Dex?

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Questions for Those Experienced with ITP 3 years 11 months ago #49252

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Deln,

I just want to say good luck to you on your next CBC and here's wishing for higher platelets!
Always remember that it is the symptoms that count and not the numbers--so here's wishing for a Deln with no symptoms.

Even my doctors tells me that
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Questions for Those Experienced with ITP 3 years 11 months ago #49254

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6/20/2015

Late Saturday evening.... No symptoms. So far, so good. 14 days after last Decadron dose.

One thing to mention. I have been sick with a cold or something the past 4 days or so. Feeling better then earlier in week but have congestion. I will really find this ironic if my immune system is being distracted by battling my viral illness instead of destroying my platelets.

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Questions for Those Experienced with ITP 3 years 11 months ago #49255

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That does happen at times. Usually it's just temporary.

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Questions for Those Experienced with ITP 3 years 11 months ago #49256

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Yeah, the Decadron lasted 15-17 days after last dose on the first pulse. So tomorrow is 15th day.

My guess is symptoms will show tomorrow, Monday, or Tuesday.

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Questions for Those Experienced with ITP 3 years 11 months ago #49260

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I have taken prednisone and my platelets dropped. Has anyone else had that to happen to them?

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Questions for Those Experienced with ITP 3 years 11 months ago #49266

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6/22/2015:

15 days after the last dose of Decadron. I don't have 'major noticable' symptoms. There's no small blood blisters on the lips, or any nasal issues. I have what I would consider a couple of 'small cuts' or small tissue tears on the inside of the cheek, near where the teeth are located. This is clearly due to chewing/food.

Not that it's 'nothing' per se, I have a feeling that my platelets are under 10,000 at the moment, but there's no 'significant symptoms' that have yet appeared. I define significant as blood bisters, constant nasal discharge, etc...

I have my next dose of Decadron 30 mg per day for 4 days ready in my cabinet and have been instructed to use it when/if there are symptoms. I am not going to use it yet though.

I think I will get a blood draw though either tomorrow or Wednesday, just to see where the numbers actually are at. Again, I expect them to be low. Likely between 5,000 - 10,000, but so long as there's no real symptoms that are inhibit me, I won't take the Decadron.

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Questions for Those Experienced with ITP 3 years 11 months ago #49267

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Deln,

If you are at 10,000 with no noticeable symptoms, that is really good. I went home from the hospital (almost 5 years ago) with platelets at 12,000 and that was fine with me.

As long as the symptoms are not there, that is good. I did the pulses 4 times, but I think that 3 would have been fine.

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Questions for Those Experienced with ITP 3 years 11 months ago #49280

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6/23/2015:

16 days after the last dose of Decadron. I'm about the same as yesterday. The 'major' or 'noticable' symptoms are not here. (Blood Blisters in mouth, nasal discharge, bruising).

I do believe my platelets are still low, however, but perhaps not low enough to cause the major symptoms.

I will probably go get my counts checked tomorrow... part of me doesn't want to though because if my numbers come back below 5,000 (even though I don't have the major symptoms) then it will cause me concern/worry and make me feel as if I need to treat or maybe even a Doctor might wish for me to treat it.

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Questions for Those Experienced with ITP 3 years 11 months ago #49304

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6/24/2015:

So, I got my blood drawn today. Counts are at 14,000. I was slightly surprised, (in a good way). They are basically the same as last week, which is good. That would make sense as I haven't had any symptoms yet. Again, I'm symptomatic when I reach under 5,000 platelets.

I'm walking a fine line here with no wiggle room. 14,000 is not far off from the 5,000 mark, which will produce symptoms.

The positive news though, is that at this time last month (meaning, 17 days after Decadron was taken), I went back down to 2,000. So this time there's a slightly prolonged response. Perhaps if I can get to 25-30 days, and then do another Decadron pulse, that might be effective...

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Questions for Those Experienced with ITP 3 years 11 months ago #49308

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Deln,

This is great news! I'm happy that you are doing better and feeling better! Actually, when my platelets drop, 14,000 is a number that I could live with.

The only thing that worries me is that there is a standard procedure for doing the Decadron pulses. I know my doctor had to consult with Dr. Howard Liebman from USC so he would do the pulses correctly. Dr. Liebman then said that I had a 75% chance of making it 5 years with the pulses. I think the standard procedure is a set of 3 pulses over 6-8 weeks.

Just thought I'd mention this.

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Questions for Those Experienced with ITP 3 years 11 months ago #49328

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Good news Dein..stay positive x

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Questions for Those Experienced with ITP 3 years 11 months ago #49381

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I agree, Deln; stay positive! And wishing you high platelets!

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Questions for Those Experienced with ITP 3 years 11 months ago #49390

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6/26/2015:

Good afternoon everyone. So I got through the week, without symptoms. My last count was 14,000 as reported, and based on my observations (blood blister free) I'm assuming that I'm still around that range.

Heading into the weekend now. On Saturday, 6/27, will be 21 days since the last Decadron pulse. I would be encouraged if I can last at least 21 - 28 days on a Dex pulse (if not more).

The question then becomes this:

SHOULD I TAKE ANOTHER DEX PULSE EVEN IF I AM NOT SYMPTOMATIC?

The reason being, if you want to follow that 4-6 pulse schedule, I'd likely have to take another one within the next 10 days, correct?

That seems to be the issue?

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Questions for Those Experienced with ITP 3 years 11 months ago #49391

  • Sandi
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If you plan to stick to the schedule and finish the pulses, I'd say yes, take it on the scheduled day. Counts are low enough to warrant that. I'd say don't take it only if you plan to stop treating with it. If you are committed to using Dex as a treatment, keep up with what you set out to do.

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Questions for Those Experienced with ITP 3 years 11 months ago #49392

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I agree with Sandy. Follow your doctor's procedure for the pulses.

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Questions for Those Experienced with ITP 3 years 11 months ago #49403

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The doctor has only said to treat with another Dex, if I am symptomatic though. (Or back below 5,000)

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Questions for Those Experienced with ITP 3 years 11 months ago #49410

  • Sandi
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Well, I have never heard of Dex being used only when symptoms appear. There is usually a standard protocol to follow when using it to try to attain remission.

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Questions for Those Experienced with ITP 3 years 11 months ago #49414

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Deln,

Again, Sandy is right. I attended a special conference with all the ITP doctors some years ago in LA. It was a special invite for us ITP patients that lived in the area. If I knew it wouldn't take me "hours", I would look up for the slide they presented on giving the Decadron pulses. I'm sure it said at least 3 pulses (4 days of Decadron--then wait two weeks and repeat again). Now, I know a lot of things have changed since then. They did say that the pulses worked best on newly diagnosed or for those patents who had not taken Rituxan or other major treatments.

I remember saving the slides on my other computer's Iomega hard drive.

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Questions for Those Experienced with ITP 3 years 11 months ago #49415

  • Sandi
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The studies I have read stated that Dex should be used four consecutive days, once a month for six months.

In the mono-center study, 37 patients with severe ITP, age at least 20 years and no more than 65 years, were enrolled. HD-DXM was given in 4-day pulses every 28 days, for 6 cycles.

www.researchgate.net/publication/237491511_Therapy_with_high-dose_dexamethasone_%28HD-DXM%29_in_previously_untreated_patients_affected_by_idiopathic_thrombocytopenic_purpura_a_GIMEMAexperience


There is also this protocol:

Oral high dose dexamethasone (HDD) was given as a single daily dose for four consecutive days, every 14 days for four courses. Twenty-nine patients were enrolled. Overall 20 patients (69%) responded: complete response (CR) was achieved in 16 (55%) patients, partial response (PR) in three (10%) patients and MR in one (3%) patient. In acute immune thrombocytopenic purpura (ITP) response rates after the first, second, third and fourth cycles were as follows: 64% (9/14), 64% (9/14), 79% (11/14), and 85.7% (12/14), respectively. In chronic ITP, overall response rates after the first, second, third and fourth cycles were as follows: 33% (5/15), 40% (6/15), 53% (8/15) and 53% (8/15) respectively. The median time to response was 14 days (4–42 days). Twelve out of 20 patients (5/12 acute ITP and 7/8 chronic ITP) relapsed; median relapse free survival till last follow-up in the remaining eight patients was 130 days (65–365 days).

informahealthcare.com/doi/abs/10.3109/09537101003637257?journalCode=plt

I am usually on board with treating only when symptoms appear, but with some meds, there is a reason why protocols have been established. The reason is so that treatments are not haphazardly distributed and used in the wrong manner. Deln, your method of treating is between you and your doctor, but we can't point you in the right direction if there are no established guidelines with what you both have decided to do. Only you know what your discussions were, so you'll have to rely on that and follow it as you see fit.

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Questions for Those Experienced with ITP 3 years 11 months ago #49418

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Here's one other issue though. Currently, my 1 year old is sick. Which in turn, has gotten me sick.

Now, I don't know honestly if by me being sick, it's switched my immune system to 'focus' on something else and not my platelets. Who knows the validity to that, you know.

If I take Dex right now, I'd probably be opening myself up to a worse illness, bacterial illness, or just prolonged infection.

So I'm not quite sure what the correct avenue is here.

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Questions for Those Experienced with ITP 3 years 11 months ago #49421

  • Sandi
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I'd just stick to what you planned to do....treat if symptoms occur. If you're unsure, call your doctor and ask him.

You can't read into it to much as far as what your immune system is focusing on during an illness.

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Questions for Those Experienced with ITP 3 years 11 months ago #49431

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Dein..remember postitive mental attitude ..you are the boss not your ITP

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Questions for Those Experienced with ITP 3 years 11 months ago #49446

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Mrs. B, I like what you wrote. Being positive and hopeful is always important.

Deln, I didn't realize that you had a one-year old at home. You just need to do what is
right for you and follow what your doctor says. Good luck to you and hope you get rid
of the virus/infection you have. Our whole family has been passing it around at our home.
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Questions for Those Experienced with ITP 3 years 11 months ago #49453

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Hi DeeDee:

I have a 2.5 year old and 1 year old. It's definitely been difficult the past 4 months. The little ones get sick and then that knocks me out. It's been tough with these platelet issues, balancing full time work, and then taking care of small children as well.

It is truly ironic that (if the theory is true) what if I have to pick my poison, you know:

1. When I'm 'healthy' (i.e. not fighting any cold/virus) my body will attack platelets.

2. When I'm "sick" then the platelet issue disappears, but then I have to deal with sickness.

What a catch-22... there's no escape if that's the theory.

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Questions for Those Experienced with ITP 3 years 11 months ago #49465

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Deln,

Hopefully, it will get better as time goes on. It's hard to deal with an illness and two little ones at the same time. Just try to stay positive and take a day at a time. I know it's easier to say that do, but you will get there. Hope you are feeling better.

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Questions for Those Experienced with ITP 3 years 11 months ago #49469

  • Sandi
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Deln:

Sometimes platelets are not affected by illnesses. It depends on the person and the illness. All you can do is deal with things as they come along.

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Questions for Those Experienced with ITP 3 years 11 months ago #49476

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Thanks ladies.

Obviously, I would 'prefer' that they are not correlated. There's much greater benefit in that.

So Saturday, July 4th will be the 30 day mark since I would have last taken Decadron (and thus, any treatment) for this ITP. I'm hoping that I can make it there okay -- and beyond.

I am not symptomatic, but I won't have time to get blood count probably for another week cause I'll be out of town over the next couple days. I'm wondering if I'm still about 14,000 or if I've increased. I may have decreased, but given my lack of wiggle room, if I decrease, I'll likely begin to show symptoms.

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