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TOPIC: Questions for Those Experienced with ITP

Questions for Those Experienced with ITP 4 years 3 months ago #48748

  • tamar
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Once you've been on prednisone for any length of time, your body stops producing its own cortisol. Cortisol is needed to live. The body typically produces 7.5 mgs. If you go from 10 to 5 to 0 quickly and your body doesn't have time to realize it needs to ramp up natural cortisol production you will likely have worse problems than low platelets.

If you hear differently from your doctor, by all means follow doctors orders. And let us know what happens....I don't think anyone here has been interested in testing an overly aggressive taper.

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Questions for Those Experienced with ITP 4 years 3 months ago #48750

  • DeeDee Marie
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Deln,

I just wanted to mention to you (event though Sandy mentioned that I wasn't the typical case) that in 2006 I had just 1 round of Decadron pulses and this put me in a 4 year remission.

So, you just never know--your platelets may be fine for a while.

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Questions for Those Experienced with ITP 4 years 3 months ago #48759

  • DelnStyle
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Maybe the Decadron will do the trick. I'm only cautiously optimistic though.

I'm more concerned at the moment with getting myself off prednisone though, in particular because it's shown that it hasn't benefitted my platelets this time. So since no benefit is received, and I'm starting to really feel the side effects now, I'd like to get off of these.

But I want to be safe of course.

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Questions for Those Experienced with ITP 4 years 3 months ago #48762

  • Sandi
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You will feel it more with a faster taper. Mainly fatigue and weakness, maybe some depression. 5 mg's isn't a lot as far as the negative side effects go, but it will make a big difference while tapering.

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Questions for Those Experienced with ITP 4 years 3 months ago #48774

  • DelnStyle
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Update 5/26:

Got my counts today, at 63,000. Highest I've been in months.

Unsure what to think now though... it's cautiously optimistic. Don't know if this is still the Decadron working, or if the prednisone of 20 mg is actually making a difference? Who knows.

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Questions for Those Experienced with ITP 4 years 3 months ago #48775

  • DeeDee Marie
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That's good news, Deln!! I'm like you, always cautiously optimistic. I would say it would be the Decadron, not the prednisone.

Good luck to you! At least it gives you a sigh of relief at the present.

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Questions for Those Experienced with ITP 4 years 3 months ago #48776

  • Sandi
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It probably is Decadron. Decadron can cause counts to skyrocket quickly which you wouldn't really know unless you got a count every day. They usually start to drop fairly quickly too...well, that is the norm for some (like DeeDee), they stay up for a while.

Good luck!

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Questions for Those Experienced with ITP 4 years 3 months ago #48779

  • DelnStyle
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This is all interesting and frustrating at the same time, as you all know.

So, being cautiously optimistic here but also a realist... I'm thinking the following:

1. The prednisone has sucked. I'm glad to be tapering off of it and hopefully get rid of the drug. Perhaps I wouldn't mind as much, if the prednisone was actually assisting. The only time it 'assisted' was back in early April, but that's when I was on nearly 100 mg per day.

2. I'm happy that my body is responding to Decadron. 63,000 is getting close to my 'normal' levels around 90,000. What I'm concerned about now is WHAT NEXT?

I think that the Decadron has shown that it will alleviate me temporarily, or perhaps, for 2-4 weeks? I imagine, with ITP, patience is the key factor here. As the antibody that is attaching the platelets will lose some of it's potency at some point and start to diminish in my system. So, perhaps I can 'get by' and use time on my side by taking Decadron pulses every 3-5 weeks if needed, and give the body time to rid the attaching antibody.

IF that doesn't work after a couple of months.... then, I'm not sure what we do to be honest. I'm guessing Rituxin.

This is all a guessing game... that's why it's called the 'practice' of medicine. Nice for Doctors, but not so nice for patients.

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Questions for Those Experienced with ITP 4 years 3 months ago #48780

  • Sandi
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Deln:

Antibodies don't lose potency. They can become elevated or decrease with or without treatments. For most, Decadron doesn't keep counts up for more than a week or two, and having to do that treatment over the course of a few months can become difficult. Side effects tend to accumulate and get worse with each pulse. Only you can decide if it turns out to be worth it.

If not, you can move on to another treatment such as Rituxan or the TPO's.

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Questions for Those Experienced with ITP 4 years 3 months ago #48781

  • DeeDee Marie
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Deln,

If you decide to do the Decadron pulses, plan on taking the day off after the end of 4 pulses. It's a big drop you feel coming off on the 4th day. I did these pulses 4 times spaced out about two weeks apart. I actually think I could have gotten by with just doing them 3 times. After each 4 day pulse, on the 5th day you can hardly get out of bed. But, it did give me a five-year remission.

Besides the pulses, I would probably like to try the N-Plate and skip the Rituxan. I've been looking on the PDSA FB page and patients are getting way too much Rituxan. I'm not sure what's going on but the doctors are giving it over and over again. It's a little frightening. And the patients are blindly trusting their doctors. This is just my opinion.

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Questions for Those Experienced with ITP 4 years 3 months ago #48782

  • Sandi
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DeeDee Marie wrote: Besides the pulses, I would probably like to try the N-Plate and skip the Rituxan. I've been looking on the PDSA FB page and patients are getting way too much Rituxan. I'm not sure what's going on but the doctors are giving it over and over again. It's a little frightening. And the patients are blindly trusting their doctors. This is just my opinion.


Agree! I get way too frustrated on the FB page.
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Questions for Those Experienced with ITP 4 years 3 months ago #48785

  • jimingeorgia
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Hio Rob,

I just saw you were online and sent you an email,

not too many of us older guys on this board, unless I haven't found them yet!

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Questions for Those Experienced with ITP 4 years 3 months ago #48789

  • DelnStyle
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DeeDee Marie wrote: Deln,

If you decide to do the Decadron pulses, plan on taking the day off after the end of 4 pulses. It's a big drop you feel coming off on the 4th day. I did these pulses 4 times spaced out about two weeks apart. I actually think I could have gotten by with just doing them 3 times. After each 4 day pulse, on the 5th day you can hardly get out of bed. But, it did give me a five-year remission.

Besides the pulses, I would probably like to try the N-Plate and skip the Rituxan. I've been looking on the PDSA FB page and patients are getting way too much Rituxan. I'm not sure what's going on but the doctors are giving it over and over again. It's a little frightening. And the patients are blindly trusting their doctors. This is just my opinion.


DeeDee,

You had success with the Decadron you stated. How many 4 day pulses did you do, at what mg, and for how long?

Sandi -

Your response was right about antibodies.... since I'm 'normally' at 90,000 - 100,000, then I always probably have this in my system, but right now, the antibody is excessively elevated.

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Questions for Those Experienced with ITP 4 years 3 months ago #48790

  • Sandi
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There are several different types of antibodies too; some affect destruction and some affect production. Those can also change. Some people develop more over time and sometimes they go away.

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Questions for Those Experienced with ITP 4 years 3 months ago #48792

  • EmilyK
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For whatever its worth, I tested negative for anti platelet antibodies and still have ITP and the indium test confirmed a massive destruction problem. There are few explanations for ITP and its course.
Diagnosed Jan 2015 at age 50 with 13,000.

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Questions for Those Experienced with ITP 4 years 3 months ago #48794

  • Sandi
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Yes, that's true. Some people have tested negative for antibodies. Some theories are that they weren't tested for all of them, or there are antibodies that have not yet been discovered. It's a complex issue for sure!

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Questions for Those Experienced with ITP 4 years 3 months ago #48796

  • Ann
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We already know that there are two sorts of ITP, antibody mediated and cytotoxic T-cell mediated.

www.ncbi.nlm.nih.gov/pubmed/12937414

"Chronic idiopathic thrombocytopenic purpura (ITP) is a bleeding disorder that is characterized by increased platelet destruction and is believed to be autoantibody mediated. In this study, CD3+ T cells from ITP patients had increased expression of genes involved in cell-mediated cytotoxicity. In addition, cytotoxic cell-mediated lysis of autologous platelets was shown in active ITP. Our data suggest that T-cell-mediated cytotoxicity is an alternative mechanism for platelet destruction in ITP."

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Questions for Those Experienced with ITP 4 years 3 months ago #48797

  • DelnStyle
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Interesting about T cells, that could be why that Orencia thing may be helpful as it targets those.

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Questions for Those Experienced with ITP 4 years 3 months ago #48798

  • Sandi
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DelnStyle wrote: Interesting about T cells, that could be why that Orencia thing may be helpful as it targets those.


That is how most of the biologics work, by targeting specific cells (usually B or T cells). It will be interesting to see if insurance covers it since it is very off-label for ITP use. Some people still have problems with Rituxan getting covered.

I suspect there are other mechanisms responsible for ITP that are still unknown. They discover more all the time.

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Questions for Those Experienced with ITP 4 years 3 months ago #48806

  • DeeDee Marie
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Deln,

I did 4 of the Decadron pulses (40 mg). I took 40 mg of Decadron for 4 days, then stopped on the
fifth day. Then, waited two weeks and started the next series of 4-day pulses. By the time I
had the forth pulse, I was really tired on the fifth day and could hardly get out of bed. Now, this was almost five years ago and I am now five years older. I don't think I will "bounce" back as easily as I did before as I do push myself a lot.

If I do relapse, this would be my first choice of treatment, but I would maybe just try 3 pulses instead of the 4. My platelets were already at normal and did not drop during this time. At the same time I was doing the pulses, I stopped taking Sinequan and was not sure if it was just the pulses or stopping the Sinequan that helped my platelets. I am presently on only one medication to help me sleep and that is all.

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Questions for Those Experienced with ITP 4 years 3 months ago #48833

  • DelnStyle
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Good morning all,

So today I'm supposed to go down to 10 mg of prednisone. I'm happy that I'm starting to get off this stuff.

When will I begin feeling the withdrawal type symptoms? Is it when I go from 20 to 10 ? 10 to 5?

I've noticed a slight lower back ache occasionally. I've also noticed increased oily skin so far. I'm assuming these things are due to prednisone.

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Questions for Those Experienced with ITP 4 years 3 months ago #48834

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I felt withdrawal with every taper. Everyone is different. It can get harder as you go below 10 mg's because that is when the body has to begin making cortisol on it's own.

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Questions for Those Experienced with ITP 4 years 3 months ago #48835

  • DelnStyle
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Thanks Sandi.

I'm really wondering how the next couple weeks will go. It was nice "not worrying" about platelet issues when I was at 63,000.

I am anxious to see if and when I begin dropping in counts. I wouldn't mind doing a couple of Dex pulses once a month of needed, as I have responded to them thus far.

Certainly anxious because since not having any symptoms, I've felt relatively normal again, other than my massive appetite. I don't think about platelets. But then, I remember, and think to myself that I'm not out of the woods yet and this can all come crashing back down again.

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Questions for Those Experienced with ITP 4 years 3 months ago #48836

  • Sandi
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DelnStyle wrote: Certainly anxious because since not having any symptoms, I've felt relatively normal again, other than my massive appetite. I don't think about platelets. But then, I remember, and think to myself that I'm not out of the woods yet and this can all come crashing back down again.


And if that happens, you know that there are things you respond to that work, and there are still options that you haven't tried.

I don't know of many people who say that they don't mind Dex pulses. :) It's not a bad short term thing, but you really wouldn't want to count on that long term.

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Questions for Those Experienced with ITP 4 years 3 months ago #48840

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Sandy,

You are right about that. I would not want to do the Dex pulses long term--definitely not! My problem I had the last time I was sick was that the doctor didn't think I was responding to anything--not even the IVIG. And, at first, I didn't even respond to the Dex at the very beginning. He said I was going to be a big problem case and he was sending me to USC. The one thing I did have going for me after a couple of weeks was that I wasn't getting any bruising or petachie--even though my platelets were staying below 10. We're all so different!

It is always good to know that you might have something to bring up your platelets. I didn't respond to prednisone, either.

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Questions for Those Experienced with ITP 4 years 3 months ago #48876

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Good morning,

Sitting in waiting room, about to get blood drawn today. I'm feeling anxious. I don't feel my best today. Kind of have aches in legs, knees, headache. I wonder if this happens prednisone taper now that I'm down to 10 mg?

I'm guessing my platelets have dropped cause the dex must be wearing off.... Just wonder how much?

What's a "normal" response to Decadron in terms of getting back to normalized counts eventually? So if I was 63,000 last week, would a drop to 35,000 be expected? 45,000?

Also, perhaps DeeDee knows this, but how many Decadron courses does it take for it to be considered a success or failure?

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Questions for Those Experienced with ITP 4 years 3 months ago #48877

  • Sandi
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Deln:

Everyone is different. Most of the Dex pulses that I have witnessed have caused counts to go from 200k+ to 3k after the pulse. Some people have done it four or five times with the same result.

Protocol states that the pulse should be done once a month (four days) for six months. If counts do not stay up after that, it is considered to be a failure. Some doctors are prescribing different timing of pulses and in that case, there is no protocol to follow to deem it a success or failure.

Good luck and let us know how it goes. Hopefully you will have a good response.
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Questions for Those Experienced with ITP 4 years 3 months ago #48882

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So.... Poor news. 2,000. Back to where I basically was a couple of weeks ago. I half expected this, but I'm so discouraged. I don't know what this means. Would another couple Decadron pulses be something that could/would work to get me back to normal? Could this drop have been due to prednisone (though I think not since prednisone didn't seem to have been helping me?)


I'm just so depressed and discouraged.

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Questions for Those Experienced with ITP 4 years 3 months ago #48884

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Deln,

I'm sure sorry that your platelets dropped. I know how depressing it can be. I did the pulses every two weeks (not once a month). I would do the 4 day of pulses then wait two weeks to start the next series. Have you considered maybe trying N-plate? I've been reading off and on the PDSA FB page and it seems the Rituxan doesn't always work for them. Or, the doctors give them way too many doses of Rituxan. Just wondering what's the lesser of "two evils" in meds.

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Questions for Those Experienced with ITP 4 years 3 months ago #48886

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Del,
I understand your depressed mind set. This is a tough disease. You have no control over your platelets and often no real way to know how you are doing until the blood test results come back. Then you have to deal with making treatment decisions while on steroids that mess with your mind. I am new, having only been diagnosed in January, 2015. I met with Dr. Provan (an expert) while in London and he told me that it usually takes about 12 months to find a treatment that works. Patience is not my strength and I have been frustrated quite often. I will tell you that I have been on steroids (which do work for me) since diagnosis and am finally down to 7.5mg. I tried Rituxan and while I had no side effects, I also had no response. I started Promacta on May 22 and went from 22,000 up to 74,000 by May 26. They continue to rise so I have cut my dose in half. It is a pill that I take at 3am. So far no side effects. There is no perfect solution and each treatment takes its toll on us emotionally and physically. There is no way I could do Dex pulses as I was ready to jump off a cliff at 60mg of Prednisone. As Sandi has said many times on many threads here, Promacta and N-Plate have the highest success rate and the least amount of warnings. Good luck to you as you go through treatment options and make decisions. It is a hard journey.
Diagnosed Jan 2015 at age 50 with 13,000.

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