Diagnosed in February, finding my way

I'm glad things seem to be going well so far! Fingers crossed that the counts hold!

Thank you for that link to the "watchful waiting" explanation. I agree that this may be a good option for me, given that my body seems to respond so well to HDD. I'll definitely consider it as I go along this road. Also, it's helpful to know about your wife's experiences with sub 30 (and 20) counts, and how they rebounded without treatment as she was patient.

It's really helpful to get further down the road, learn more about what my body does, get more information, and have more options for care isn't it? Makes it all feel more livable.

Platelets dropped from 317 last week to 173 today.

Part of me wants to worry about that, but since I can't control it anyway, I've decided to focus on the fact that they are still within the normal range, and more importantly, WELL above 20K, which is the number that I'm trying out (mentally) as the beginning of my "not as comfortable" zone. I'd actually love to move that number down to 15, but I don't know if I dare yet. I'm still feeling my way, figuring out where I'm most comfortable, mentally, physically, emotionally, but every step on the road gives me more experience, more knowledge, and more practice at navigating, and I think I'm getting better at it.

At the very least, I figure this number has bought me another glorious steroid-free week, and probably much more than that.

Physically, I feel fine. Went hiking on Saturday, visiting graves of loved ones on Sunday, made a mess in the kitchen cooking up a storm yesterday. It feels marvelous to be able to do all the normal life things that I used to take for granted. One of the hidden blessings of ITP for me has definitely been an increased appreciation of good health when I have it.

Charlotte:

Great attitude! Good for you!

That sure seems like a rapid wean-off. I was put on 60 mg of prednisone in April, 3 years ago, and weaned off it til Sept., going down 5 mg every two weeks or so. My counts never dropped. I wonder if it was the slowness of the wean.

Hey Roberta! Nice to see you!

A slower taper can make a difference for some, not all.

High Dose Dexamethasone (which is what I had this go around) is administered differently that Prednisone in cases of ITP. Instead of taking it for several days/weeks and then weaning the patient off it slowly, the patient takes it in huge doses for no more than four days and then goes completely off.

I've done Prednisone in the past, and my doctor (different than the one I have now) tapered me off it rather quickly, which might be part of the problem that I've had in the past. But, for this particular med, my understanding is that it's a quick (and kind of agonizing) burst, repeated for up to six months if necessary. So, I'm not too concerned about the quickness of the wean, this time around at least.

Four days is exactly how Dex is supposed to be dosed.

Dex may just be for 4 days but the 10 days after it were hell for me. It had no lasting effect so I'd never do it again.

I guess I'll see how things go for me in the future, but for now, I much prefer Dex to Prednisone. Days 1 and 2 with Dex weren't all that bad for me, days 3 and 4 were much worse, and life was pretty awful for about 2 1/2 days after I stopped, but then things got better in a hurry, and within a week of when I started the whole treatment, I was feeling pretty good again.

Yesterday I hit two weeks out from when I started the treatment, and I feel completely normal health-wise. I'm sleeping great, and have my energy back. Best of all, I don't feel like I'm becoming an irrational crazy person, like I did on Prednisone.

Different bodies, different responses I guess.

Well, you're the exception to the rule, Charlotte, but that's a good thing!

I'm getting CBCs weekly these days. Last week's platelet count was 67K, down from 173K the week before and 317K the week before that (the 317 was almost surely due to the High dose Dex that I had taken the week prior).

I was a little disappointed with the 67, but not surprised, and not upset. I chose not to treat of course, found a new bruise and a tiny bit of petichiae over the weekend, and went in today for this week's CBC with trepidation, but trying not to get tied to one count or another, telling myself that whatever the number said, I'd deal with it and go from there.

Well today the number is 81. :laugh: So, higher than they were last week, with no treatment whatsoever in nearly a month. I'm trying not to get too excited about it, because it can be discouraging when I get low numbers if I've gotten too excited about the high numbers. I'll admit though, I'm pretty darn happy. It's a good day.

Take what you can get. For today, you can be happy!

Just checking in:

I'm on day 3 of my second round of my High Dex pulse treatment. This round has been a little easier I think, not that the symptoms are better--I'm just as exhausted, edgy, with my vision being deteriorated, I've got the munchies and hand tremors, and brain fog as usual--but now that I've been through it all once, I have what I hope is a fairly good idea of how long it's going to last, and I'm guessing that I'll start feeling better in 3-4 days, and considerably better within a week.

My hemo is pleased with the way my counts haven't dropped to dangerous levels, but he feels that completely stopping the Dex treatment after only one round would be essentially the same thing as what my family practitioner was doing with the Prednisone--giving me high rescue doses and too quick tapers, not giving my body a chance to learn what it is supposed to be doing on its own. So, it's back on the steroid wagon for a bit for me.

The current plan is for me to get biweekly (instead of weekly) CBCs for now, and do another Dex pulse treatment after I see hemo at the end of July. I think the total number of Dex treaments we're planning on me getting is four, but of course that may change, depending on this or that.

I've still got a good gut feeling about where this is all headed, and about the treatment that I'm getting. Still liking my hemo, still feel like I'm on the right track. It's a good place to be, and I'm glad to be able to realize that, even through this oh-so-inconvenient brain fog!

Platelets are at 302 today, up from 81 two weeks ago.

Maybe I'm analyzing this too much, BUT, with my first Dex treatment, my platelets were at 317 on the third day after I finished treatment. One week later, (so 10 days after I finished treatment) they had dropped to 173.

With this treatment, my doc moved me to biweekly instead of weekly cbcs. So, I skipped the cbc on the third day after I finished treatment, and just got the one ten days after finishing treatment. That's todays cbc, which is 302.

So, this time around, it looks like I'm holding the higher counts longer than last time around. (302 today versus 173 at this point in the first Dex cycle). That's gotta be good, right?

I'm to recheck in three weeks. I would be rechecking in two weeks, but my doc will be out of town then, so as he said, those results would fall on deaf eyes (yes--he said deaf eyes. Funny guy that Dr. of mine.)

Still feeling hopeful, and grateful that this road seems to be getting easier instead of harder.

Charlotte:

That is the point of doing about six pulses; counts are supposed to hold longer with each one. Ideally, that is the goal but realistically, it doesn't work that well for everyone. Maybe you will be one of the lucky ones that the studies talk about!

Charlotte, you may not be familiar with the studies Sandi is referring to. I don't think I linked you to a post I made 16 months ago, where in one study 6 cycles of 4 doses of HD-DXM produced a 90% 15-month relapse free survival rate, and in another study 4 cycles of 4 pulses of HD-DXM produced an 81% 15-month relapse-free survival rate (where relapse-free means required no further treatment during the 15-month period). Here is the link to the discussion:

pdsa.org/forum-sp-534/7-treatment-general/27806-prednisone-versus-high-dose-dexamethasone.html#46771

Here is the article:

www.bloodjournal.org/content/109/4/1401.full?sso-checked=true
Therapy with high-dose dexamethasone (HD-DXM) in previously untreated patients affected by idiopathic thrombocytopenic purpura: a GIMEMA experience

DeeDee Marie responded that she got a four year remission from just one 4-day cycle of HDD. That is probably an outlier.
But the odds do seem to improve with more cycles. Even with "only" 4 cycles, the odds are very much in your favor.
As I see it, the "luck" Sandi refers to is more that you are able to tolerate HD-DXM so well.

Rob16 wrote: As I see it, the "luck" Sandi refers to is more that you are able to tolerate HD-DXM so well.

Both tolerance and sustainability.

Ha, I sound like the government.

Thanks for the link to that study, Rob.

As to the luck I have--I'll take it! I DO feel very fortunate, having read the accounts of many who either 1)weren't able to tolerate HD DXM or 2)didn't get any meaningful response from HD DXM or 3)both. I realize that it's no small thing that my body tolerates it well nor that it seems to be responding so well. I'm grateful.

Got another CBC today. My platelets are at 171, down from 302 three weeks ago, but still in the normal range. It's been five weeks since I've had any treatment, but I still have a normal platelet count. That hasn't happened since this whole journey started in February, and I'm VERY happy.

The not as happy, but probably best in the long run, news is that my doctor wants me to do another four-day high dose Dexamethasone cycle this month, and probably another in August. That will make four cycles total, and then we'll look at where we are and make decisions from there. This lines up with what he and I have talked about all along, and what my research (most of which you all helped me find) shows is appropriate So, I'll start the meds later on this week.

Having to go on steroids notwithstanding, this is really good news, and I'm really encouraged.

I haven't had much to report, and sometimes it stresses me out to spend a whole lot of time focusing on ITP, so I haven't been here for awhile. But, today I start my sixth and final HDD round, and I thought that was worth mentioning. If all goes as usual, I'll feel okay today and tomorrow, and then I'll feel really awful the next three days, and then I'll start to feel a little better every day after that.

And then we find out if I'm in that 90% 15-month remission category or not. Here's hoping!

Charlotte,

You are a real trooper to be going the full six rounds! In the monocenter study, only half (19/37) of the patients made it through all six rounds (the median was 5 rounds).

You mentioned the 90% 15-month "remission" rate. To make sure everyone is clear on this, it is a 15-month "relapse-free-survival" rate, which means no treatment necessary during that time period (and "no treatment necessary" in this study means platelets not below 20k). It does not necessarily mean normal counts.

Ellen, now 26 months after treatment with low-dose-Rituxan combined with high-dose dexamethasone, has had counts mostly in the 50s. Early on they dropped twice below 20k (17 and 19). Her most recent counts were 20k and 30k. She has never needed treatment. I would call that relapse-free.

My point is that to get the longest possible relapse-free survival, you might have to let your counts drop fairly low from time to time. Knowing you respond quickly to dex and pred should help ease your mind. Though many in the study did have normal counts, be prepared to be satisfied with just okay counts.

Please keep us posted. Good luck!

Thanks Rob, for that clarification. That was my understanding, but I didn't make that very clear with my wordage, did I? I'm glad you spelled it out more.

I've been thinking about what I'd like to do from here. Of course, it depends on what my body does, but I'm leaning to a hybrid "watchful waiting" scenario-- getting less-frequent CBCs (preferably no more than monthly at first and then decreasing if my counts hold safe-- right now I'm semi-monthly) and only treating when I have actual bleeding symptoms, like long nosebleeds or blood blisters, or counts around 10 or lower. I know that's not "true" watchful waiting, but knowing my personality, I think that might be a good compromise for me. I'm very encouraged that my body responds so well and quickly to steroids, so I feel like that gives me some liberty there.

I meet with hemo in about a week and a half, and I'll talk it over with him then.

That sounds like an excellent plan! Ellen is doing something similar. She only does testing when serious bruising occurs. Not testing on a regular basis is very liberating. Also, to eliminate the possibility of a spurious count, she only will treat with at least two consecutive counts below 20.

Best way to go Charlotte.

I thought I'd check in here with an update:

I completed my last HDD pulse towards the first of November, and since then I've had safe platelet counts, and haven't needed any treatment whatsoever!

I don't get regular platelet checks these days, just when I notice extra bruising or other symptoms. So far that's happened twice, and my counts on those times were 147 in January and 108 a few weeks ago. So obviously, I'm really encouraged, and grateful to have found a treatment that my body seems to understand. I kind of expect that I'll have to treat at some point again, but for now, I'm enjoying being steroid-free and thick-blooded.

To those of you who have given me encouraging words, or advice, or shared your knowledge and experience with me, I just want to say a giant THANK YOU! You made a difficult road bearable and manageable, and I can't thank you enough.

Rob16 replied the topic: Diagnosed in February, finding my way
Charlotte,

You are a real trooper to be going the full six rounds! In the monocenter study, only half (19/37) of the patients made it through all six rounds (the median was 5 rounds).

You mentioned the 90% 15-month "remission" rate. To make sure everyone is clear on this, it is a 15-month "relapse-free-survival" rate, which means no treatment necessary during that time period (and "no treatment necessary" in this study means platelets not below 20k). It does not necessarily mean normal counts.

Ellen, now 26 months after treatment with low-dose-Rituxan combined with high-dose dexamethasone, has had counts mostly in the 50s. Early on they dropped twice below 20k (17 and 19). Her most recent counts were 20k and 30k. She has never needed treatment. I would call that relapse-free.

My point is that to get the longest possible relapse-free survival, you might have to let your counts drop fairly low from time to time. Knowing you respond quickly to dex and pred should help ease your mind. Though many in the study did have normal counts, be prepared to be satisfied with just okay counts.

Please keep us posted. Good luck!

Rob,
After over a year of counts above 60 (generally in the 100ish range), and no treatment since November, I noticed some extra bruising this week and got tested. Platelets are at 54.

So, I just want to say "thank you" for this explanation of what your wife has done with her counts, and how she hasn't panicked and how it has made it so she was able to be treatment free for 26 months (as of 8 months ago). You've given me some ammunition (should I need it) when I next see/talk to my hematologist. AND re-reading this has helped me not to panic at the return to these relatively low numbers.

What a help that is to me! Thank you!

-Charlotte

Charlotte, I am glad to have been of help to you, but all that I have given you was passed down from Sandi! I laugh now when I think how scared I was until Sandi very patiently calmed me down! Now you are setting the example for others who come behind you.
Ellen did finally have to get treatment, in order to have a high enough count for an overdue colonoscopy. A four day dex pulse did the trick for her (in fact, two days would probably have been more than enough to bring her count from forty-something into the 50s). Otherwise, she remains treatment-free, but with occasional bruising.
Thank you for the update. It is always great to hear from you.

Thanks, Rob. That's the goal; to pass down what we know to the next person and the next, etc....so that we have a team who can all pitch in and help anyone in need! You explained all of that very well, by the way (count drops). I was thinking that just this morning.

Since I last checked in here, I've had my counts drop to the point that my Doctor prescribed Dex pulses twice. So, I went through a round of that in August (which shot my count up from 30 to 268), and then just finished another (which shot my count up from 19 to 303).

I'll meet with my hemo in November for my semiannual appointment and we'll talk about where we go from here, if it's time to try second-line treatments, or if we continue to treat low counts as needed with Dexamethasone, which seems to work well, but is fairly disrupting to my life, and might be damaging to my body on the whole.

In honor of September being ITP Awareness month, I started a blog where I detail some of my ITP journey, in hopes of helping others who are either going through it, or have loved ones going through it. Among other entries, I recently kept a day-by-day journal there of my experience with the Dexamethasone cycle this time around. Although every body responds differently, my hope is that sharing my experience might provide help to others who are looking to get a handle on how they are going to navigate this road.

One caveat: I haven't spoken much about it here, but I'm a religious person for sure, and the blog definitely reflects my beliefs and how I've relied on God to help me through my ITP experiences. So, if you're a person for whom that might be triggering or unhelpful in other ways, be advised.

The address is charlottedoesitp.blogspot.com/